Federal Chelation Study?

We looked into chelation years ago. My husband and I both didn't feel right about it for several reasons, some of them specific to us, and some of them concerns about the treatment in general. Instead, we decided to pursue an herbally based program with a heavy focus on nutrition and proper preparation of foods (soaked grains, etc.) combined with interaction/play-based therapy.

That said, I've never felt parents who opt for chelation are making a bad choice. It's not one I would make, but that has no bearing on another parent's choice. Different kids and all that.

So, why do I feel squeamish about a possible federally funded study of chelation as it relates to autism treatment? Oh there are so many, many reasons.

Here are a few of my concerns.

1. From my perspective, everything the federal government touches suffers. There are some things you want the feds involved in, but let's face it, the fewer entities the government takes over, the better the country runs. Getting the feds involved should always be a last ditch, no-better-way-out solution. I would much rather see universities research chelation, especially those with top-notch medical schools. Unlike tearing apart the synergistic nature of herbs, studying the effects of chelation should be perfect for researchers: a simple, straightforward process that already has D.O.'s who keep good records as a matter of course.
2. Is the federal government as objective as some would like to think? A federal study is huge in its effect. Corporate influence is there at the university level as well but no university has the impact of a federal study (from what I remember anyway... it's been a long time since I had any respect for any study). What kind of corporate/PAC/lobby influence will we see in the chelation study?
3. This is more about autism in general. I've seen too many studies fall into too many traps for many reasons that are endemic to researchers of many different fields. These include both studies that told me what I wanted to hear and those that didn't. The idea that mercury causes autism, though worthy of study, might also easily obscure other related theories that are just as valid: three off the top of my head include the idea that it's all the preservatives combined, there's a genetic predisposition toward side-effects/autism spectrum, and the vaccines weaken the immune system from the start.
4. But I think this final one is the one that worries me the most: what if they find that chelation works? Now, if the studies are accurate, this would be all well and good... in fact it would be wonderful for parents. Just like vaccines were considered wonderful... for most kids. The problem was not that vaccines were good or bad. The problem is that the government decided everyone had to have them. My concern is that this study might be used to encourage parents to get a therapy that isn't right for them, that (just like public schooling and vaccines) parents who decide not to get the therapy will run the risk of harrassment at best. I don't even want to think about the worst.

I know, I know, I'm being paranoid about all this. Maybe. I've seen too much garbage, heard too many horror stories, and don't even get me started on what Texas did to the FLDS kids. Then again, I'm a mom and moms worry.

A few things I forgot to mention

Horse therapy won't happen. First, it's the summer and way too hot. Second, the waiting list is incredibly long (I know, I know, that's weak). Third, we need a reference from a medical doctor and we've been having a hard time finding a medical doctor since most are gung-ho about vaccinations (can you tell we aren't?). A lot of the parents I know (mostly online) either go with DAN! doctors (we don't want to do that protocol) or D.O.'s. I don't mind a D.O. but I really don't want to do chelation and I'm worried a D.O. would press for that. Plus, I'm not sure a D.O. would count (I might call back and ask). I have a possible lead on what sounds like a medical doctor that I haven't followed up on yet (bad cavamil) so maybe that last problem will change. And finally, fourth, and this is a big one, we don't have the ability to get the girls down there for therapy at the times we would need to apply for in order to speed up the process. I'm not even sure we could get the girls down there at all since we currently have outgrown our van. So, for right now, no horse therapy.

Too bad (and I don't mean that in a flippant way), but there are always other options. Anyway, here's an article about the place: Pony Sparks Fighting Spirit of Girl With No Arms. Maybe someday.

On a lighter note, Rachel has really taken off in her drawing. I mean, really taken off. She's dramatically improved in just a few months. No time today, but by Friday I hope to have a couple of pictures scanned in and either posted here or on my Flickr account. Until then, pray I don't get sidetracked or overwhelmed. :)

Busy, busy, busy bee.

Well, I guess when I want to get things done, I should say I'm resting. :)

Warning: This is going to be a long post.

I've thought long and hard about the Son-Rise program. I love it. The principles are wonderful and the playroom is a great idea that has worked very well for us when we've been able to use it. I love their loving, accepting approach to autism and the way they focus on interaction skills in the therapy. I especially love the fact that they put the parent at the head of the program. My own experiences have proven to me that no one can get through to my kids more than those close to them, which means family then friends. Therapists offer great guidance at times but the day-to-day stuff still falls on my shoulders. And the Son-Rise program is, in my opinion, the best at helping my children overcome their delays.

That said, I have decided to no longer pursue setting up a full-time Son-Rise program. As wonderful as it is, we just don't have what we need to incorporate it like I want. We live in an area that has very few potential babysitters and those who would be great just don't have the time. So, there goes my time in the playroom. As for volunteers, I don't want the legal and financial hassle of creating a foundation or becoming part of an organization just so that I can ask college kids to come to my home to help my children grow.

And this bring me to my main reason for not doing this program. It's not really the room. Well, okay, it kind of is. We rent, and that means there are things we can and things we can't do to the room. I realized that I want the option of putting in a door with a window so I can see how things are going or setting up an intercom so that I can hear how things are going without distracting Rachel from the therapy. But it's more than this. I also want to be able to rip out the carpet and put in vinyl sheeting or laminate or something that can be easily cleaned. I want a house that looks nicer than the one we currently rent so that I won't feel we're running an amateur operation, because frankly that's the last impression I want to give. I want homey and warm, not sterile or run-down. Unfortunately, this is going to take a lot more work than just fixing up Rachel and Sarah's room. It's going to require a move and possibly buying a house. Since both are impossible at the moment, I'm putting it all on hold. The most I may try is a once a week playtime with Rachel since she has quite a few more social difficulties than Sarah.

Obviously, I'm still going to apply the basic principles.

So, the next question is, what will I do instead? Well, a long time ago, before we realized that Rachel's problems were bigger than speech, we bought a speech therapy program advocated by NATTHAN called Straight Talk by Marisa Lapish and Tom and Sherry Bushnell. We have both volumes. It has references to Christian scripture in it and advocates starting a therapy session with prayer, so if you're offended by that, just ignore it. Personally, I liked the spirituality they brought to the topic. Its core though is speech therapy and having been through private speech therapy and public (ECI) speech therapy I can say that this program does a pretty good job. Volume Two, Part One focuses on listening and creating an environment where language becomes vital. It also works on vocabulary on a "level" basis. Part Two includes developmental checklists so you'll know where your child is at age-wise in his/her speech, instructions and a form for a very nice comprehension test based on the previously mentioned checklists as well as instructions and forms for taking a language sample. Once all that is done instructions and a form are provided for daily speech therapy sessions.

Volume Two is very thorough when it comes to principles and forms. It's only weakness is a lack of suggested activities to help develop the areas mentioned in the checklists. We overcame that by looking for books like The New Language of Toys by Sue Schwartz and Joan E. Heller. Also, although they recommend making therapy part of the everyday schedule, the form and some of the instructions assume that you'll be pretty formal in most of your sessions, which may or may not be the case.

Anyway, I'm definitely going to try it again since it takes very little time out of the day to do if you decide to make it a "session" (about 15-30 min.) and even less if you incorporate the learning in an already planned activity. So, this past weekend I did all the evaluations and the sample. It was nice finally getting some stuff on paper again.

We will also be using Volume One of Straight Talk. Rachel has always had trouble with pronunciation but I didn't realize how bad it still was until I did a language sample over the weekend. It's bad enough I had to do the general overview test of speech sounds to find out which sounds she keeps missing/mispronouncing. It's a pretty long list. Next (i.e. tomorrow) comes the deeper tests on the individual sounds. Once again, from what I can see there's very little in the way of suggested activities; however, I'm sure we'll be able to find ways to teach the sounds just like we've found ways to teach more general topics.

(Note: for those who wonder how on earth a parent could not realize how badly their child mispronounces words 1) a parent expects some mistakes and 2) a parent learns to decipher a child's meaning from all sorts of gobblydegook. Just look at the parents of really young toddlers and watch them as they have what seems to be a pretty advanced conversation with a toddler who seems to be speaking gibberish. After a while of watching you'll realize the parent is just a very good translator.)

All this talk about struggles with pronunciation leads me to my final topic: a quick review of Building Bridges Through Sensory Integration by Ellen Yack, Paula Aquilla and Shirley Sutton.

Building Bridges is meant for parents, educators... heck, anyone else willing to spend the time reading it. The focus is autism and PDD or any child who has trouble processing sensory data. Part One gives a nice overview of terms and their definitions (so everyone's on the same page) as well as the theory of sensory integration and the role of the occupational therapist in your therapy plan. It's here that they also mention the Wilbarger Protocol which I found very intriguing even though they make it clear there's no scientific studies that say it's useful.

But it's Part Two that most parents will flip to immediately. That's where they talk about identifying sensory integration problems and also suggest strategies for dealing with various issues. They also have a really neat list of items you can make to help calm your child, like weighted vests (you'll have to find your own vest pattern... all they do is tell you how to modify it) and the weighted snake. This book is especially helpful for those whose children are very young up to early elementary school, possibly a few years beyond depending on the strategy.

All in all, I like this book a lot. It's given me some new insights and strategies as well as helped me figure out what to look for if I decide to get either of the girls into occupational therapy. I highly recommend it.

Finally, I'd like to give a quick nod to the publisher of this book (I have no affiliation whatsoever with them though I did live down the street from them at one point). Check it out: Future Horizons, Inc.

Update: Interaction, interaction, interaction.

FLDS and parental rights

Just wanted to add that, although I don't agree with the FLDS, I am very glad the Texas Supreme Court said CPS had overstepped its bounds (the decision said there were other options they hadn't tried yet... not that the raid was illegal... wanted to make that clear because the news keeps getting it wrong). I'm also glad this brought "standard policy" into the open. What CPS did didn't surprise those in the homeschooling community, but apparently it got to some others. Too late for links, but definitely do a Google on the latest news. This is a fascinating and important group of cases.

Late again

This weekend has been a bit busy (I say that a lot don't I?) so I didn't have a chance to blog like I'd hoped on Friday. Soooooo, better late than never.

I did all right with trying to stay calm. Pregnancy hormones didn't help, but remembering to talk slowly helped keep me calm for the most part during a very stressful week, what with Sarah and Rachel still freaking out about the puppy. Rachel no longer sits on the chair when the puppy is out of his crate: she has footie pajamas (they were on sale and in a size 14 and just adorable) that she uses as a kind of protective suit. So, when the puppy is out, she'll put on her "suit" and walk through the house (no running because the puppy will chase her) with her hands on her head (so the puppy won't try to lick them). And every time the puppy licks her feet, she giggles and says "It tickles, Mama." :) Hopefully, as the puppy gets better with obedience training, she'll get more confidence around him.

Sarah on the other hand, swings back and forth between sitting on the chair and refusing to even come out when the puppy is out. I think a lot of it depends on whether or not she's eaten, what she's eaten, and how stressful the rest of her day has been since I've noticed she's less tolerant in the afternoon than in the morning.

Both of them love watching the puppy and will gladly go up to him when he's in his crate and try to play with him. It's only when he's out of his crate that they become terrified. Using a leash helps a little but not much and often it's not feasible.

On my to do list today... call up that equine therapy place and see what the requirements are to get Rachel and Sarah enrolled. It might be a bit much to continue during the fall, but I've been thinking for some time that this might be a very good thing... maybe even necessary for their development. I mean, if they can handle being around a horse, why on earth would they get upset around a puppy? Right?

Oh, and my posting this month will definitely be spotty. I've entered the June Capsule Contest at Stitcher's Guild because I am in desperate need of some maternity clothes and I haven't been satisfied with anything I've seen in the stores. Either it's the wrong color or the wrong style or... anyway. (As if I don't have enough to do already. :))

Goal for this week: Focus on lengthening interaction.

Has it really been three months?

It's been a long three months. I found out I'm pregnant, we acquired a puppy, a close relative of mine gave birth and I was involved in the festivities and gifting, and this on top of homeschooling, therapy, and trying to figure out how to get our SR program off the ground, not to mention the daily grind of watching over 6 kids and helping out my husband.

It's been two years and we still don't have anything set up. To say I'm discouraged at this point is a bit of an understatement. So, for just this post, I'm going to rant a bit and indulge in a little self-pity. Feel free to ignore if you like. Following the rant I'll make some goals for summer.

I have had enough. I have been going full tilt since 2000 and eight years of never taking a break is more than enough to press a person to burnout. I haven't been able to get any volunteers (a fair number of calls but no takers) and I don't feel comfortable going through the university when we rent a house. I'd feel much more comfortable if we owned our house and could get it properly set up so the volunteers could be supervised in an adequate environment. Plus, there are a few repairs that need to be done before I even feel comfortable doing any sort of therapy in there (we recently fixed the blinds but the walls need to be painted and our landlord still hasn't fixed the closet door).

So, we've been doing therapy in a more informal way. Except it's getting more and more difficult to do that, especially with all the other recent draws on my time (puppy, pregnancy, etc.). Thank goodness we aren't just doing SR; we've also been using diet and nutrition and those aspects of our home-based program are going strong. In fact, I think a major reason Rachel and Sarah continue to grow is because we haven't focused all our attention on one therapy for them. SR is something I've been excited about ever since we first found out about it, but it's proving next to impossible to get the support we need for it.

Which brings me to my next topic. We haven't been able to find a babysitter. You'd think, with all the young moms in our area that maybe one or two might be willing to get a little extra cash. You know, bring the young ones and just watch five kids for an afternoon (2 hours) twice a week. It can't possibly be that hard. However, apparently when you use any number larger than 2 in reference to the number of children you would like someone to watch people just shrug and say it's too big a job.

It's not. When you have that many kids, they mostly amuse themselves. The only reason a parent is there is to make sure no one pokes their eye out.

Or are young mothers that overwhelmed by motherhood nowadays?

Granted, I've been staying mostly in my own church for this and occasionally talking to people at the university. So, maybe I need a more thorough plan to get our SR program going. I've already gotten an offer to attach our family to a larger group so that we will also be considered a non-profit organization... but the thought of all the legal hassles that might entail just makes me even more tired than before.

And that's what I feel the most right now. Tired. I'm too tired to write anymore, so I'll just go to the goals for this summer.

• Rest. That's a big one right there. Between rest and good food over the next two months, I might be ready for school to start again in August.
• Get the girls' room up to snuff. This means painting the walls and fixing the closet door, even if it means fixing it ourselves (I'd much rather the landlord fix it but you gotta do what you gotta do).
• After the room is in what I consider a therapy-conducive state, make a list of all the local churches and begin putting up ads for babysitters. Also, place ads in the local paper and at the local health food store. (If worse comes to worse there's a babysitting service that recently started up in our area... I might end up using that though I'm not sure if our budget can handle it).
• Here's the most important one. I need to figure out some low-energy way to create more cash flow. Blogging would be one way, but the problem is that the topics for the two blogs I have aren't something I feel comfortable turning into a cash flow site. And I'm not good enough at sewing yet to feel comfortable using that as a money-maker. So, for the next two months, I'm going to list my skills and see if I can't make an extra $500 a month starting in September. That's pretty reasonable, isn't it? Heck, even $100 would be nice. And before anyone thinks that my husband doesn't make enough and should make more, that isn't it. He has always worked very hard for this family and I don't want to take away from that. I just don't feel it's fair to him to shoulder the responsibility of bringing in all the income, especially when the extra we need is such a small amount. However, there's a reason I stated "low-energy" earlier. As I said before, I'm tired. I don't need a way of making money that will take up vast amounts of time I don't have.

And in the interest of making sure I rest, I think that will do it for goals this month. I will also try to post to this blog at least once a week, with a goal for each week in the various areas we're trying to improve so that I make sure we keep doing the SR program informally at the very least.

So, I open the floor. Any ideas on the above goals? And thanks for slogging through my rant. I promise I will do all in my power to make sure it's a long time before I feel the need again.

Oh, and I also got a sensory integration book and a music therapy program. The music therapy program seems to be a bit unnecessary at this point for Sarah, but I think it might really help Rachel who isn't quite as high functioning as her sister. And the sensory integration book will definitely help both of them. I'll review both next week.

Goal for this Week: Responding to unacceptable behaviors by slowing down my own behavior and responding quickly to acceptable behaviors. It's kind of like positive reinforcement except the reinforcement comes from seeing how people are much more likely to respond in the way they want if they behave in a socially acceptable way. Stimming is exempt from this.

Update: Sarah has stopped flapping her arms for her stim. She now has a phrase I can't understand that she chants. It doesn't happen more than a handful of times during the day and because I can't understand the phrase, I feel hesitant joining. So, for now, I'm just going to accept it and work on the above goal. Maybe next week.

Homeschooling in California and Update

First, the update... yesterday, for the first time ever, Rachel gave one of her sisters a piggyback ride. In fact, she gave several. :) I'm thinking it's an herbal formula we've been using the past two months called (this is just something we've found works for us and may not work for others) Complete Bone and Tissue Formula (syrup form). It's from the Christophers. We've liked it so much that we're thinking of using another product of theirs called Kid-e-Trac. That, combined with the nutritional supplements we've been using for years now (we use Dr. Schulze's Superfood recipe and cayenne now and then) should really help Rachel.

(BTW, we believe that herbs should only be taken until the body has healed itself. That means a clear focus on foods and general wellness instead of popping herbs like they're a cure-all.)

Sarah has been having some behavioral issues lately. Mostly talking back and hitting. I think it's the white flour. We don't have her on the GF/CF diet anymore since we found that as long as we kept dairy out, she seems to do better. However, I'm now convinced that white flour is a big no-no. Each time she has it, even in a small quantity, her behavior the next day gets worse. Whole wheat flour doesn't seem to have the same effect. She also seems to do better when we limit the amount of bread (whole wheat soaked and cooked seems to do her the best so far).

As for babysitters, no luck so far. Will widen my advertising this week.

Now, for homeschooling and California's recent ruling.

It's pretty disheartening. In countries like Germany, homeschooling has been banned entirely. And now, in California, the most recent ruling indicates that only a parent with teaching credentials can teach their child at home.

I'm no lawyer, but I do have some thoughts on the scope of this ruling. If only parents with valid teaching credentials can teach their child at home, what about parents of special needs children? It's conceivable that a state could also demand a specialization in teaching special needs children if you want to teach them at home yourself. This is a pretty big, panicky, slippery slope because I'm taking one ruling in one state and applying it to the nation. Actually, I'm taking more than one ruling in the state of California (I'll have to look for it since it was by the Ninth Circuit and had to do with parental rights v. the state) as well as the Nate ruling the other day. It's just I live in one of the best states to homeschool, law-wise, and I don't want anything to change.

It doesn't hurt that I'm a confirmed cynic.

I'm also glad that the CA superintendent has issued a statement (see the first relevant article linked above... fifth para.) that seems to say he won't enforce this ruling because the current system works well.

Update: found this article with this beautiful quote:

But Croskey, without hearing arguments from the school, opined that the situation was a "ruse of enrolling [children] in a private school and then letting them stay home and be taught by a non-credentialed parent."

I was taught from K-6th grade through a correspondence course. Looking back after my time spent in two public school systems (one in Texas and one in CA), I realize I learned far more than others my age and didn't suffer in the slightest when it came to friendships and socialization. Or, I should say, no more than any average pre-teen does. ;) And the primary teaching was by... my parents! It's just the way things work out with a correspondence course when kids are young.

So, yes, this ruling does seem to not only affect homeschooling parents but also those who use distance learning and correspondence courses sponsored by private schools, public charter schools, and universities.

This is bigger than I thought.

Another Update: this article from Albert Mohler found through another site adds yet another gem of a quote. This time, the article quotes the actual text of the ruling (found here in pdf format if you want to look at the original). This is the text from the original... not Mohler's thoughts.

The trial court's reason for declining to order public or private schooling for the

children was its belief that parents have a constitutional right to school their children in their own home. However, California courts have held that under provisions in the Education Code, parents do not have a constitutional right to home school their children. Thus, while the petition for extraordinary writ asserts that the trial court's refusal to order attendance in a public or private school was an abuse of discretion, we find the refusal was actually an error of law. [emphasis cavamil's]

I haven't finished reading the ruling, and I'm not a lawyer, so I can't bring any expertise on this matter, but it sounds like this is the way things have been in California for a long time. It's just that a "truce" of sorts has been in place between the homeschoolers and the public school system there. However, what disturbs me the most is that bolded phrase in the above quote. This, of course, goes back to the argument of who takes care of the child and I've run out of blogging time for the day. More tomorrow if I can.