ATEC Score, Then and Now

It wasn't until I was reading over an autism grop today that I remembered the ATEC Scoring website and recalled that I had used it once before.

The first time I did the test was June 2004, just days after his doctor suggested autism, and before we did anything. Before diet, chelation, ABA and EI classes.

His overall score was 90 on a scale from 0-180

I just did his ATEC score again today, the first time in a year and a half. It was 54.

WOW!

The most significant jump in his score was his Health/Physical/Behavior, in 2004 it was 36, today it was 18.
The contributing factor to his health was the GFCF diet, the contributing factor to his behavior has been the ABA.

I'll do his ATEC again in June 2006 for a full two year progress report.

Derek Update

Over a year has passed since his diagnosis. Its funny to me, because the diagnosis isn't really an anniversary of denial or sadness, for me its one of victory. Finally, someone could tell me what was wrong with my son, and with a proper diagnosis I could quit chasing the "developmental delay" and all the crazy paths it was taking us.

A few things I don't regret:

- a gluten and casein free diet, wow, I still cannot tell anyone how much this helped Derek. I know many others say it does nothing, but at the time it was the only thing we did for months and it was a night and day difference.

- chelation. We are at a spot right now where his prescriptions have run out, and we cannot afford a doctor nor the prescriptions. I know he needs more, I know it will help him more, as it proved itself in the past.

- ABA. The GFCF diet and chelation brought my little guy out of a deep fog within himself and sensory issues galore. As those issues started to clear out and lesson the ABA was able to come in and teach him everything he needs to know. Knowing where he was, I just never could imagine the ABA helping him from day one. I couldn't imagine trying to do ABA with a 2 year old who was falling asleep every 2-4 hours all day on and off because he was so out of it and so tired and his gut and brain so messed up from the gluten and casein. It would have been a mess.

What I do regret:

- being scared of ABA. After reading a book where a mom outlined her ABA therapy, where she told of the son screaming through sessions and the harshness of making him sit still, I cried. I could never imagine doing that to my child. However, Derek's sessions aren't like that and never have been. If he cries its because he's frustrated, and that happens all day long in and out of sessions. He's cried a couple times because I'm walking away, but nothing more than if I have to leave to get groceries and leave him home with dad. He loves his therapists and they do such an amazing job with him, I really think its all about the personalities of the therapists and how the sessions are done.

- not being more forceful for things. This is a broad statement, but in general I am a pushover. I have had to learn to demand change, demand answers, demand results.

Here we are, just over a year later. Where are we? I'm very happy with where he is, very happy. He speaks in full sentences most of the time now. He's expressing preference for things "I want to pick a DVD, get Tristan?" Double whammy! Wants to pick his own movie out and wants a specific family member to help. And let me tell you, if it doesn't go that way, total meltdown!
We're working on those too, those meltdowns. I'm not too concerned, he is 3 1/2, pretty typical behavior for his age, and if he's still falling a year behind or so, then certainly typical for a 2 1/2 year old to tantrum over everything.

He's been learning "what's next", so now everytime we leave the house he needs a rundown of our stops. Store, then post office, then home. Has to know where the home comes in.

Oh yes, the fun stuff. Potty training. He's ready, mom just needs to get her act together and get a chair and get going. He's stripping everytime he poos and wets a diaper. We have to watch him like a hawk. He is ok with trying to go in the toilet too, the problem is he's too short to reach over the top of the bowl, poor kid! So mommy needs to get a stool he'll feel safe on and a potty seat.

Tonight, instead of calling for me "mmmoooooommy" like he usually does, he said 'hey momma" just like his older sister always says when she talks to me. SO CUTE. And good imitation skills far outside of immediately mimicking someone.

Concerns from myself and therapists right now are almost all social related. I'm thinking of a couple things right now, one is to go to the school district he's in for Early Intervention and see is they have a NT preschool program that he can go to with an aid. (trust me, this is easier said than done) and second would be to pull him from Early Intervention and place him in a Montessori or Waldorf preschool setting. Not sure what I want to do, we need to have a team meeting to discuss it.

My only other concern is food. Trying to get him to try new things. Also I have been trying to get more vitamins into him, and its another no go. This time I got some syrupy sweet juice and mixed them in. Not interested. *sighs* I just know some of the EFA's and B vitamins would help him out a lot. I know they help me.

Something I was thinking about the other day, as a marker in development, a year ago he was still drinking from a bottle. In that year we've ditched the bottles, went to a cup that couldn't have a seal on it because it was too hard for him to suck, to introducing more cups instead of the specific type, to a straw, to now him drinking out of sippy cups with seals, straws and a regular cup! That's progress!

Autism Speaks Update

Ok, proverbial foot in mouth?

Did some more crusing of the Autism Speaks website tonight and came across some more stuff that makes me pleased. In their listing of books and magazines they specifically have Evidence of Harm and What Your Doctor May Not Tell You About Your Children's Vaccines.

Very good reading if you haven't read either. For the skeptic I think author David Kirby really lays it out well for the reader to make an informed decision of what has really happened with our vaccine program. And Dr. Cave's book should be framed in my home, it was the book that Derek's dad read and finally came to understand what I had been saying for years. Its a good book for the reader who likes science on his/her side.

So I'll leave Autism Speaks alone for now, they are doing the best unbiased job they can. Since they are a non profit they do need to keep an arms length from the autism arena.

More on PA and Indiana

Moi ;)
had asked about the Indiana insurance and mentioned about what PA offers.

Here's more on the Indiana mandate

Here's what I know about PA, I'm paraphrasing from an email that I received from a mom who moved from Oregon to PA for services:

- each qualifying ASD child (and other children with disabilities) get a Medicaid card no matter the parents income

- this card gets services at no cost to the parent- in home ABA, a BSC (similar to a consultant or BCBA from what I gathered from the email, I could be wrong), coverage for OTs, PTs and SLPs, zero copay on medical and Rx coverage which includes dental care, WIC, family support services money for other therapies not specifically covered under the above.

- families can get reimbursement on miles to and from the appointments

- school special ed system is very good and follows an ABA model, especially good for younger children


Like I said that's paraphrasing an email I got, another parent's opinion on the services in PA. Since I'm in Oregon I haven't a clue, but it certainly sounds better than what we have. As it is, I have to fight my son's insurance company even if I wanted to have him see an OT, PT or SLP.

Autism Speaks

Ok, I'll admit I'm slightly impressed. I was cynical at first when I heard they merged with NAAR, but I was browsing their site today and they have specific pages set up on autism and vaccines.
Vaccines & Autism

However, on the treatment information page, and even the alternative treatment page, there is no listings for diet, chelation or anything relating to biomedical treatment. Come on Autism Speaks, step up to the plate and offer some balance!

They also link to Unlocking Autism
which is also good, because the parents in the Parent 2 Parent network can offer help to other parents on the entire range of treatment issues.

So for now, I give them a B on their information.

What do you think?

Why Do I Let It Get To Me?

Its funny how simple typed words can just make you wish you could reach through the computer and grab someone by the shoulders and shake them. Hard.

The infamous and sometimes annoying pro-ABA group in my state is on my nerves again. It seems I find more bad than good from this group on a daily basis. The senior members hate the school districts, hate biomedical treatments and even in some cases hate any behavior modification except "true" ABA. Hate is a strong word, so maybe they are just disillusioned?

I say this because a lot of this group has been around 10+ years, and they just don't seem to be up to date on the current happenings within other parts of the community. Because ABA worked for THEIR child and nothing else did, then that MUST be the cure. Wow, had no idea these parents were doctors and scientists. And because a treatment that you feel as a parent has helped your child, notice I said HELP, not CURE, you are a loon for even thinking of it, and God forbid you actually do it.

The backstabbing, back talking and general rudeness of this group shall not be missed by yours truly. The fact that they refuse to be open minded and objective is their downfall. I've NEVER dismissed their opinion to do a certain type of behavior modification for their child, one that they as parents feel is the best for their child. So why should my choices be treated as wrong? Am I not entitled to the same courtesy?

Folks, this is our hugest problem as parents with ASD children. We are fighting each other. I've said this until I'm blue in the face. Why can we not accept the fact how we each choose to treat is our choice. You might not agree with it, or follow that treatment, and that is well within your right as a parent. So PLEASE STOP making other parents feel awful for their choices.

We need to ban together and DEMAND help. We need our insurance companies covering autism and treatments associated with recovery. We need our states to help provide services. Take Pennsylvania, they have a very good start for help within their state. No child is denied and coverage is available quickly, no waiting lists, and is financially reasonable for families. We live in the United States, and one state should not be providing better services than the one next door, we are doing our children a disservice. Insurance companies charging premiums should not be allowed to deny our children coverage. If our children had cancer, leukemia or diabetes we could find help. We could go to any major city and find special treatment centers for them, special programs, and free and low cost services to help those without insurance or low income.

I encourage you to treat your child as you see fit, as their parent. But I also encourage you to start state Parent Action Coalitions to demand services, coverage and help. Demand this from the insurance companies, demand this from your state medical and school services. Stop suing the districts into the ground and instead make a stink and get laws changed. You might get the $50k to run YOUR program but what about the rest of the parents in the district?

For those of you in Oregon, stay tuned. I want to launch a Parent Action group soon. I want us to have a law that requires private and company health insurance to provide behavior modification coverage, like that of Indiana. I want to demand that there isn't thimerosal in vaccines given to children and pregnant women. I want our state to look at the program in PA and start something similar.

Yes, that's asking a lot, but it can be done. It can only be done with parents willing to help, willing to step up and demand this. Lets stop fighting each other, and start fighting the system that is not helping our children.

Toxic Kids

Ever wonder what a toxic kid looks like or what all the hub-bub about these hair tests are?

Here's a couple for you

Test #1 was done October 2004 before any chelation, look at the insanely high levels of aluminum, arsenic and antimony. Don't those sound like great things to be so high in your body?

Test #2 sample was taken March/April 2005 after a few rounds of chelation. Look how the aluminum has gone up. They say its one of the first metals to pull from the body when you start chelation. Antimony is still off the charts too.

If You Can't Say Anything Nice....

Remember that saying mom told us over and over again?

"If you can't say anything nice, don't say anything at all."

I think far too many people have forgotten that old saying. I read an editorial today that just made me shake my head. I really feel Cindy's pain. At best, support among parents is lacking most times. If you take a side, you'll have tons of support. But stand in the middle and make choice on your own, well, you're on your own.

I've thrown almost everything in the book at Derek. We do biomed, diet and now ABA.

I don't see a DAN! doctor but I follow the advice of Andy Cutler in my chelation proceedure and a practitioner he recommended to me. Because of this one message group out there would attack my posts because I dare mention Andy.

I also belong to a local ABA support group that though their name would make you think they are open to all treatments, dare you mention anything but ABA and you are shot down.

You feel really lost and really alone sometimes.

I'm not saying that I have not got support, but the chatter and put downs among groups regarding anothers choice is just outrageous. As long as we as parents put anothers choice down, we'll never get anywhere. Learning to respect anothers choice is key here. And to respect means to keep your mouth closed (or your fingers off the keyboard as the case may be).

Next time you go to put down someone for their choice of just trying to help their child, remember what mom used to say.

Commentary on Current Media

You may have heard or read about the 5 year old boy in PA that died during a chelation treatment. Concerns from family and friends have sparked my commentary on this.


First, I do not fault the parents for their choice of chelation, I do not fault any parent for their choices with dealing with autism. Studies are limited on all accounts, from treatments to therapy and sadly us parents are forging the way to helping our kids. We don't get billions of dollars in funding like juvenile diabetes or leukemia, though 1 in 166 kids are on the spectrum, more kids have autism than juvenile diabetes or leukemia. Its a very sad situation to be in, to loose your child right before your eyes and no one will help you do anything about it because there are no studies or the disease itself is so politically charged. I've never seen a childhood disease be fought about so much instead of people banding together and just try to help.

The media has taken this story and only a few reports have got close to a correct story. They are taking something that the reporter knows nothing about and talking to one sided sources, and not even coming close to doing their homework.

This boy was using an IV chelation method, using a chelator called EDTA. As you all know, I am against IV chelation, I personally feel it is too harsh and too fast. In some cases, and I don't know about this one, but children are given a large dose of the chelator over a 24 hour period to see how much metals are removed from the system. My feeling on this is that this is too much stress on the body, and can leave the metals to retransport themselves to body organs and cause more damage than good.

The media is mainly talking to sources that are against chelation. I've read ONE story out of 15 last night that talked to parents who have an organization that are pro chelation. Just ONE. The next thing the media is reporting incorrectly and I've read this in all articles is that chelators are given under the skin or orally. This is not true, as you know in my case all of Derek's chelation medication is given topically either a cream or drops put on his skin and rubbed in. His chelators are not given in mass but rather in very small doses that require me to give them as often as every 3 hours including through the night. My philosophy is to take the metals out slow and allow the body to recoup each time for at least a week before chelation is done again.

The media also has not mention at least four other chelators that are used, leaving the average reader to think there is only one. The other four commonly used are DMSA, DMPS, ALA and TTFD. All of these can be administered in different methods as well from IV, oral and transdermal (skin).

Lastly, the media has failed to mention that this is the first death that we know of since 1950's using IV chelation for autistic children. I think that with thousands of parents using this method thats a pretty small ratio.

One of Those Three Month Updates

I'm getting good at these ;-)

I would say in a way we've taken the summer off. EI has continued with some time off here and there as per the public school schedule but we've missed chelation schedules since late June. Some due to my sheer tiredness, and some due to traveling.

Speaking of traveling myself, Derek and my oldest took a trip across country to visit a friend in New Jersey for a little over a week. It was quite a trip, a flight to Baltimore, a stay there for 2 days, then a train to Philly, then a flight with a plane change home. Derek did SO well. I think he was the best behaved 3 year old on the flight! People would come by and comment that they had no idea he was even there. It took a lot out of me because I kept him constantly entertained but it was for a few short hours and we made it through.

He slept well, he was a little "stimmy" but it was to be expected. He loved the New Jersey shore and sat with me on the beach with the waves smacking us in the face for nearly an hour. There was a lake by my friend's home and he was thrilled, I think he was a fish in a former life. My friend has a daughter the same age as Derek and since we've been home he asks about his friend and wants to play with her. I printed out some pictures of them and lamenated them for him.

Our in home ABA program started in late June and its going well. We're at 2 hours a day 5 days a week and will work up as he can tolerate it. He's still napping so between EI in the morning and ABA a couple hours in the afternoon he's got a full schedule right now. My therapists are great, I had so many issues finding someone who wasn't flakey. Missed interviews, calling and canceling was just becoming a nightmare. Now we are dealing with insurance, we've finally got approval for ABA coverage but its almost nothing, at just a few hours a week it will be out in 5 months.

Now that trips are over and ABA is going I'm getting back into things, chelation and trying to figure out how to get vitamins into him. I'm also looking into DMG/TMG. Also a second hair test has been done and I'll be sending that in tomorrow. He's still GF/CF and that continues to go well. He's even had a peice of pizza with no ill side effects! He's obviously got some gut healing going on.

My other plan is to start to introduce potty training. At EI they take him to the bathroom with the other kids so he's exposed daily. He also follows us in too, and washes his hands with us, so there is some sense of toilet use and a routine to it. Wish us luck!

One last thing- I've joined an autism blog ring, and I invite you to check out the other blogs.

Lots of Media

Over the recent weeks there has been a mass amount of media covering the issues of autism and mercury poisoning and if there is any link to the thimersol that was in most vaccines up until recently, although it is still found in some, like the flu shot. I will start talking about this as time allows but I think two very important points need to be made, two points that I think some in the media, and some opponents are trying to use against those of us who believe this to be true.

They are:

1.) This is NOT an anti-vaccine campaign, but one to get the mercury out of all vaccines given to children and pregnant women.

2.) This should not be a political issue, its about our kids and pregnant moms and what is best for them.

Please think about those things. If you are an opponent, please understand this. If you are a supporter please help me relay this message.

And now for the update....

Got a few new things going on. Two weeks ago we added in the ALA cream for the first time. I didn't see any reactions, didn't see anything that was great either. Being that there was no reaction we will continue to use it. Its a bit of a crazy schedule now that the ALA has been added in. For two days we do the 8 hour DMPS, then for three days we do the two mixed every 3 hours, including through the night. Sort of like having a baby again, getting up every 3 hours, except its to a blaring alarm clock and not a crying baby. Then we go back to two days of DMPS to finish our bi-weekly schedule.

Derek also started in the Early Intervention program. Its 12 hours a week, and he's doing pretty well. Its a small classroom, with a 1:1 ratio but I swear I see more teachers than kids in there sometimes, which is fine with me. They use a combination of therapy, some discreet trials, some floortime, some verbal behavior. Its a nice little mix. There is also peer time, when they have the kids eat snack together and do some circle time activities as well. I like the mix of therapies, and I think its a good amount for him right now, he's exhausted when he gets home and can sleep for 3-4 hours each afternoon if I were to let him.

Lots of new words, phrases and sentences happening as well, just a very gradual and continuous progression, and for now thats all I can hope for, as long as its constant all is good in my eyes. He's doing really well in public settings too, its really great to see, hardly any ear covering anymore, and tolerant of noisy and busy places to a degree. He walks around singing his ABC's all the time, along with his versions of Twinkle, Twinkle, Little Star and Old MacDonald. Both are quite humorous to listen too. Jay, Jay and Sesame Street and the newest video obsessions along with Ice Age, which he refers to as wanting to watch "elephant".

Food habits are still the same, very few things he'll eat, and not much in to trying new things. He is very interested in what we are eating now, and that's encouraged me to start looking into enzymes with the possibility of him eating or beginning to eat more normal foods.

Everything continues to be positive and moving forward, I'm very grateful for that.

Switching Gears

Going to be switching gears here from now on. Not only will there be updates on Derek, but I think its time for me to start speaking my voice. I've wanted to for a while now, but didn't want my opinion to get in the way of documenting a recovered child, but in a way, even the way I choose to recover Derek is in itself, an opinion.

With April being National Autism Awareness month, and after the paultry and pathetic show CBS put forth on awareness last month, and with the book Evidence of Harm by David Kirby there is just a lot I want to say.

I'm the worst with updates

50 lashes for me! But no one has bugged me for updates so maybe its not that important ;) ?

3 months have past and it feels like just a few weeks, time is flying around here. Derek is making leaps and bounds, its so incredible. The TD-DMPS has gone perfectly. Each round shows us new words, actions and progress. I just spoke with his practitioner today and we are now going to add in the ALA.

We've been working on pulling together an ABA program for Derek. We have had initial approval that his insurance company might actually cover some of it. That's pretty huge as most companies won't even consider it. I'm still working with them on the language of the approval and what it needs to entail, but its a start. He's also been preliminarily accepted into a half day program through the school district. Its a small classroom of about 5 kids with similar levels of autism and 5 teachers. They do some 1:1 work and also group work. We hope that combined with in home ABA will provide the therapy he will need and we'll see some more progress.

In reading over the pasts posts I can see where another great improvement has happened. His sleep. While he still heads to bed pretty late at night, around 11pm, he either sleeps all night now, or wakes only to come crawl into bed with us. Oh and he's officially out of our room and on the bottom bunk in with his brother. Sleep is a huge hit in this house :-)

He knows his alphabet, numbers 1-20, most of his colors, about 8-9 different shapes and has begun to spell- CAT, DOG, PIG, COW are the main ones and he's working on MOM, DAD, BOOK. He can almost write all his letters too, though they are upside down and backwards. LOL He can draw some amazing things- a house, tree, flower, train and more. At this rate I will never want to play pictionary against him and his sister.

So there's a little update, maybe I'll get to another before another three months pass. ;)