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.
Friday, December 30, 2005
Thursday, December 22, 2005
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!
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.
Monday, December 12, 2005
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.
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.
Friday, December 09, 2005
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?
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?
Wednesday, December 07, 2005
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.
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.
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