Whew, so busy!  Just dropping in for a minute in between hot gluing and chomping down CSA produce to announce that the Charm City Craft Mafia will be co-sponsoring a really cool event on Sunday in Baltimore:

Come see us at our booth, and work on some very interesting projects.  Perfect for the eco-minded lot out there…

I was reading a post from one of my GFCFSF diet autism moms today about how she was watching her son play, and realizing how “autistic” he was that day.  She said it so well- you know your kid has autism, but it’s still your child, it’s not that you forget, but sometimes you blur the line between their personality and their autistic traits, out of self-preservation, maybe.  Anyway, I’ve been feeling like that this week, too.  We’ve had a lot of violence, and more at school that’s new- directed towards his classmates in addition to his teachers.  It’s just exhausting, this. 

At the end of the post I just mentioned was this quote, and while I’m not sure it’s true, and I don’t speak Chinese, I love it too much to research it and find that it’s not accurate-

“Perserverance: to continue on with a knife in your heart.”  -Chinese language

I gotta be honest, I ain’t missin you at all.  Kidding!  Miss you! 

Here’s an essay in pictures of what’s happened since I last graced you with my presence (snort). 

Zander had his 4th birthday, which was full of balloons, not too many presents (thank you, family!), and lots and lots and lots of bubbles. 

We went to the yarn shop fundraiser, where Miss Sue (or, as Zander calls her, Miss Suess) had a ton of baked goods, happy knitters, and most importantly, eyeball stickers.  They were meant for the balloons, but were much more fun on shirts.  Let this be my public statement of unending gratitude for Sue and everyone who chipped in for Zander- there was over $1000 raised, some of which has already been put to excellent use, like covering our last installment for our organic CSA share, and a long-coveted communication board that is already working like a dream for him.  I highly recommend it, if you can drop the $$$ (and it’s not cheap!). 

I’ve also been taking more time for me, which sometimes, if I’m lucky, includes such lovely things as roasted vegetables, good friends, and red wine.  Sometimes, it’s even all three:

…and then there’s all the mindfulness I’ve been practicing.  It’s always seemed kind of counter-intuitive to practice noticing- I was always left wondering why it isn’t an automatic response to all the glory around us every day of our lives.  We all know it most certainly is not, especially when there’s a small person tugging at your solitude at all times.  So, lately, I’ve been trying to focus on one thing: the weather.  I remember one day when I was in college (Fluff, this was when we lived in Breton, or whatever that building was called) so clearly- I had gotten home from class at about 3 in the afternoon.  It was Spring semester, probably March, and it was just warm enough to open the window directly above my bed a crack and let the coolest of breezes in.  What followed was hands-down the best nap I’ve ever taken.  I remember the blanket, the color of the window frame, the sounds of people outside, the hysterical laughter of my roomate Ligeia, all like it just happened, and I think the memories stem from that breeze.  So, on days like this:

… I’m standing up and taking notice as I cook and clean and tend to that solitude thief below me.  It makes all the difference in the world. 

Sage: Mom? 

Me: Mmm hmmm?

S: How far away is outer space, really? 

M: It’s really far, a few miles up from the earth, but I don’t know the exact distance off the top of my head. 

S: Is that farther away than heaven? 

M: <stammering> duh… uh…heh… 

What would you have answered that (BRILLIANT) question with?  I think I managed something like, we don’t really know, b/c we aren’t there yet, and we can’t ask the people who are there, so we have to wait and see. 

Easy 7:45am conversation, right? 

**In towners, make sure to drop by ye olde yarn shoppe tomorrow for the fundraiser- the birthday boy will be there around 3pm.  Pictures to follow!**

Hello, visitors from Lovelyarns, and everyone!

Sue has done us such a service in hosting a fundraiser for us- for those who aren’t coming from the Lovelyarns email, my local yarn shop owner has organized a Saturday (like this) knitting session where everyone will be charged to attend, then she’s pledged to match the funds raised to help with Zander’s medical expenses.   I stopped in to the shop today (for Mental Health Wednesday, of course), and already there have been donations.  A huge thank-you to everyone who has and who will contribute- it is so moving to me that this whole community cares about my baby (who, according to Sue, is officially a giant).  I also want to say, before I forget, that the event at Lovelyarns is happening (and this is quite by accident, I assure you) on Zander’s 4th birthday, April the 12th.  I will be there at some point with him, and allergy-friendly cupcakes. 

All the attention has generated some questions and super ideas, so I thought I’d do a quick update to let everyone know where we are, what we’ve done, and what’s on the horizon for us relating to the big Z.   Also, today is World Autism Awareness Day, and April is Autism Awareness Month. 

At the beginning (in October 2007), when Zander was diagnosed with PDD-NOS, I started reading a lot about the “autism diet” popularized in Jenny McCarthy’s book.  We adopted it formally towards the end of November.  Sage and I also follow the diet, because it’s healthy, it’s a lot easier than worrying constantly about cross-contaminating Zander’s food, and it’s delicious. 

What we CAN eat:

Organic produce

Organic (mostly) free-range eggs

Organic, free range, hormone free, antibiotic free, nitrate/nitrite free meats

Organic nuts, seeds, and beans

Gluten free grains (rice, corn, quinoa, sorghum, etc.) 

What we CANNOT eat:

Gluten grains (wheat, rye, etc.)

Dairy foods (milk, cheese, and most “dairy free” milk and cheese substitutes, which contain the protein casein)

Soy foods of any kind

Preservatives

Artificial colors and flavors 

So, nearly everything I make is from scratch, as the pre-made things that fall into the “can eat” category are very expensive, and, in my opinion, as tasty as newspaper.  After we started the diet, I immediately noticed gains in Zander’s eye contact, language, and fogginess- he seemed to have a constant head cold before this, and I mean he had respiratory symptoms, but also that he sort of acted like he had medicine head.  The medicine head started to lift at this point. 

WARNING TO THE CHILDLESS: DIAPER DISCUSSION DIRECTLY AHEAD! 

Z’s diapers have been so gross since he was weaned from breast-milk- I mean, so smelly that a gas mask seemed like a really good option, if it wouldn’t have made my baby feel as though he was being changed in a war zone.  Opening all the windows didn’t always make the smell go away.  The smell laughed viciously at me when I got out the air freshening spray.  It was sort of a demon lurking in his pants.  It was NOT GOOD.  I could go on to describe the consistency, but I don’t want to turn you off from reading my blog ever again, so let’s just say it was the cousin of Demon S. Smell and leave it at that.  His diapers did not improve with the diet change, which surprised me.  I was to find out the answer to this conundrum later… (FOREshadowing…dunt dunt DUM!)

During this time, I was also going through the Baltimore County ChildFind program, which was where he got the original diagnosis, to have Zander placed in services.  In the end, it turned out that I had to go through the Baltimore City ChildFind, which proved to be the nightmare that all big(ish) city bureaucracy is- they ended up delaying his placement for almost two months because one low-level employee would not run something by her supervisor.  Of course, when I went to the supervisor of her supervisor, he was very helpful and quite apologetic, and expedited my IEP meeting.  The result was that Zander was given a private placement at Kennedy Krieger’s Fairmount School.  He started there in the last week of January, and almost immediately, I saw gains.  The biggest one was that he sat on the potty- something that made him react at home as though I’d suggested that he try sitting on a porcupine.  At KKI, he has many different kinds of therapies and educational interventions integrated into his daily routine.  I’ve also learned a ton from his teachers- we’ve implemented his school schedule at home on weekends, and he uses a visual schedule to help him know what’s coming up next.  I’ve also made a bunch of “work” activities for him, which I may post here individually during April.  All of these changes have helped him to be less violent when transitions happen (he used to really lash out, and he still does occasionally, but much less often now). 

Next, we found out about a DAN! (Defeat Autism Now) doctor in the area who was highly recommended, and has a son on the spectrum herself.  A friend I met through a local agency generously offered to pay for the first 2 hour visit (the doctor is about $350 per hour, and that’s the mega price break she gives me, because she’s charitable). She examined him, and commented to me in one of those moments when you sort of feel like all the air has been sucked out of the room, “is his belly always this distended?  He is so bloated, that’s got to be painful for him.”  The answer was yes, it did always look like that.  She later asked me if he ever laid over the arm of a chair or in “child’s pose”, over his knees on the floor with his bum in the air.  He almost always did that, which she told me is an indicator of belly pain.  He has not (as of yet) been able to self-report; he can’t tell me he’s hurting or hot, or lonely, or sad.  It’s just not part of his depth of knowledge yet. 

We had a battery of tests, including blood tests, hair tests, and urine tests.  The results revealed the answers to all his diaper woes — raging bacterial and yeast infestations in his intestines (referred to by those who discuss such things as “the gut”).  His hair tests showed elevated levels of antimony (a flame retardant found in children’s pajamas and carpets, among other things) and a severely elevated level of lead in his tissues.  It is thought that the metal toxicity persists because the immune system is too busy fighting off the gut infections to rid the body of toxins through the normal channels. 

The past two months, along with the diet, we’ve been treating his gut with 2 kinds of antibiotics, two yeast medicines, probiotics, vitamins, and herbal treatments like Cod Liver Oil and Grapefruit Seed Extract, and other therapeutic elements, like the humble yet effective Epsom Salts bath.  We’ve introduced all of these things separately, to ensure that he wasn’t having negative reactions, and to make sure we could check the effectiveness of each. 

His gut (and, consequently, his diapers) have enjoyed dramatic improvement.  He’s no longer leaning over things, which I hope means his belly isn’t in constant pain.  He also began eating foods he had previously rejected (broccoli, cauliflower, cooked carrots). 

Next on the horizon is treating the metals.  The process is called chelation, and I don’t know a whole lot about how Zander’s course will be.  It might be long and very expensive, it may not be.  We’ll know more next month, when we visit the doctor again.  As for the source of the lead exposure, it’s unclear.  I’ve had our water tested, lead paint is not a problem in our house, I’ve replaced plates and toys that were suspect, but the fact is, I may never know where this lead came from, and I could spend the rest of my life (and measly nest egg) hunting for it.  Instead, I’ve attempted to remove possible sources of exposure that were feasible to remove, and doing a lot of praying about the rest. 

Please feel free to email me if you’d like more details about Zander’s DAN! doctor, his treatments, or his school.  I’d be more than happy to share what I know.  I will say to close, that this story is very common amongst the autism moms I am lucky to know.  Why it happens this way, why our kids have these common challenges to overcome, I cannot say, but I thank God these moms are out there helping those of us who are desperately searching for help.  I hope this information can serve someone as those moms have so graciously served me.

Oh!  I almost forgot!  In a recent post, I was hoping.  Tonight, as I tucked him in, Zander grabbed my neck and pulled me down close to his face for a kiss, saying, “Love Mama!”  I could only laugh to keep from crying- I’ll take it, little man, I’ll take it. 

I remember thinking the other day how the poor people who used to come here for some light-hearted craft reading are likely feeling out of luck.  I have continued to make things, although they take much longer to finish (and start), and I am almost taunted by great ideas lately.  It’s a part of my brain that I can’t turn off, happily, although it’s frustrating to say the least.  But, much like supa the other day, I decided this week to tempt fate- I thought, if I make a new winter hat, it will surely get really warm the minute I finish it. 

It’s Reynolds Lopi, which I’ve had in a box (and I have a ton of it- I think it was meant to be a sweater) for literally years… pattern is my own, as I can’t possibly attend to a normal pattern with the frenetic pace around here.  I never use patterns, who do I think I am kidding.  I don’t know, I can’t be bothered.  Hence the wonky cables, which I love.  If it isn’t a bit wonky, then I didn’t make it. 

The gargantuan tassel lightens it up.   I lourrrve it.  It’s super warm, too. 

Remember the secret big idea?  I’m nearly 3/4ths of the way through it… big reveal this week, hopefully…

Just a reminder to check out my little mini-series over at the mafia blog.  And thanks to Vanessa for inspiring it!  Here’s a teaser…

Happy Friday! 

Ok.  I got the water test back, and now I’m really confused.  It wasn’t zero, but it wasn’t enough to cause this kind of lead level, either.  I am honestly not sure what to think, or do, about it now, other than follow the protocol for chelation and hope the exposure has ended.   I’m not one for blind hope, though.  It’s really troubling me. 

We’ve had some really lovely weather the past day and a half, although now the cold front is moving through and bringing the rain along with it.  Sage and I stepped out the door this morning and she took a big sniff in before exclaiming, “It still smells like warm!”  And you know what, it did smell like warm.  Just like warm, in fact.  We are ready for Spring. 

I ran into an old friend today, and remembered how nice it is to catch up with someone you’ve not seen in quite a while, especially when they are the kind of person who was sorely missed while they were gone.  We had a nice talk, then Sage came in, regaling our guest with detailed (and by that, I mean, more detailed than any person without children is ready to hear) accounts of her recent stomach flu.  Luckily, he’s a good sport. 

I have to admit feeling really overwhelmed lately.  I have a lot going on at work with Lent and Easter just around the corner, the next mafia show is creeping up on us, obviously all this Zander stuff is eating away at me, and I’m still really pining away for a little piece of life that’s just a relieving force for me.  It’s hard to see that place right now, and I honestly don’t know exactly what it would look like, but I think I’ll know it when it presents itself.  Why does living in the moment feel so strenuous sometimes? 

I am really loving my ipod right now, this and this (I think I have that very tiny piano in my living room) are getting a lot of play, as well as my man Mason. 

It’s nine pm, and I’m going to bed.  My brain is tired and my chest is tight.  My feet are “sparkling”, as Sage says when they fall asleep.  I kind of feel like my whole body is sparkling right now.  And, I’m rambling.  Goodnight, my internets. 

Hello there.   I’ve just been hemming and hawing about sharing this info I’ve recently acquired, and I’ve come to the conclusion that changes are afoot, and I’d like to explain them before they’re all here. 

Zander’s autism specialist has brought to my attention the problems she’s found in his body.  Among them is an extremely high level of lead toxicity (not lead poisoning in the blood, rather in the tissue- it’s actually worse than in the blood), and a pair of super intense infections, bacterial and yeast.  The Dr. thinks that the lead has come from the water in our house, as we don’t seem to have any lead paint.  I’ve ordered a kit to test the water, and in the meantime, I suppose we’ll need to use bottled water to drink and cook with, and install a shower filter to fill the bath with.  I’m looking to buy a house now, so that if I need to install a whole-house water filtration system, at least we’ll be able to reap the benefits fully. 

My little man will also need to go on 2 long courses of medication to knock out these infections, all told about 2 months’ worth, then we can start chelating to remove the lead.  All of this is going to be extra tough on him physically, and I’ve been told to expect the worse as for as regression, physical symptoms, and behavior. 

SO.  While I’m so grateful to know what’s going on in his body, this is pretty overwhelming.  I have a plan, I have support, but still, it’s hard not to shut down in my head when I think about it.  I just keep imagining how his brain might work without a poisonous level of metal.  How well his intestines might be able to do their jobs if they weren’t fighting a losing battle with multiple enemy armies. 

How maybe, someday, he’ll say “I love you, mama.” 

Gotta keep hoping, and moving, and talking.  Thanks for listening. 

I got my Ravelry invitation!  WHEEE!! 

If you’re on there, how do I find you?  Please assist!  I’m hvmdesigns. 

Hooray!  If you’re not on there, and you knit/crochet, get your name on the list- it doesn’t take very long at all for your invitation to come up!