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.
