Julie Obradovic has written the definitive work on all that sucks about autism parenting. She says all the things that we work so hard not to say.
Autism Perception: "A Bump in the Road?"
Showing posts with label Parenting. Show all posts
Showing posts with label Parenting. Show all posts
July 17, 2009
July 5, 2008
I Love Autism Moms
I love how they just don't give a crap about the usual vanities and modesties when it comes to their kids.
July 4, 2008
To Lisa Ackerman and All the Moms Who Had Time for Me
In the spring of 2004 on a Friday I walked into my first autism conference, a little one in Long Beach, California.
Chandler had been referred to the state only a few weeks earlier and that very day Scott was with him at his first formal evaluation. It was a lonely day with an overwhelming flood of information that I barely had any context for yet, punctuated by phone calls from Scott and the speech language pathologist to ask questions, and, of course, a lot of tears.
How in the world was I possibly going to be able to do all the things that these people were talking about?
Saturday was much of the same, except not quite so lonely as Scott was able to join me.
That night was one of those conference dinners, and we decided to go to see if we could make contact with someone who was actually managing with it. We plopped down at the first table we walked by and a very friendly woman introduced herself and wanted to know all about us and our son. That is how I met Lisa Ackerman.
She was the first biomed mom that I ever met and God could not have been more gracious to us in choosing her as our first contact. She was cheery and funny and encouraging and answered all our questions and gave us lots of advice and convinced us that night that we could do this. And the thing that she said that convinced me that we could do it was that she noted that I was not at the conference by myself. That my husband was sitting next to me, holding my hand, and that not too many moms at that stage have that kind of support from their husbands right out of the gate. That some dads never joined in and that some dads even left. If they could go it alone and make their kids better, we could certainly manage it together.
Scott and I walked out of that dinner smiling, partnered, and with real hope that we could get our boy to come back to us. And for the most part, he has.
You can look back on life and pick out very important conversations that you know God had to have arranged, because they ended up meaning so much. We call them Divine Appointments.
And Lisa was just the first in a long line of Autism Moms who had time for me.
Shortly thereafter when I started reading the vaccine research and wrestling with the questions of what did the government know and when did they know it, I stumbled across a web site called Safe Minds and dialed the number listed to try to confirm that what I thought had happened had actually happened. The call rang straight through to Lyn Redwood's cell phone and she sat in an airport waiting for a flight and patiently answered freshman questions from a still naive young mom who could not quite wrap her brain around the fact that the government and her own pediatrician would knowingly inject mercury into her babies.
I don't remember the words of the conversation, but I feel like it was something like this:
And then there was the wife of a successful hollywood producer who was the acquaintance of a friend who didn't know me from Adam, that called me out of the blue and insisted that I come over immediately and meet her son. She told me about how he was completely non-verbal and wanted me to see how verbal he was now and tell me about floortime therapy and what schools I should look at and what speech therapists I should try and on and on. She wanted me to see with my own eyes that her son got better and mine could too.
And there was Bobbie Manning who patiently explained to me what the hell was going on in Washington...
And there was Sym Rankin who I called 14 times to figure out how to spell Phosphatidylcholine...
And there was Michele Brock who answered a question on an autism list and told me about the autism services available in the small town in Maine we were thinking of moving to...
And there was Holly Austin who let us come to her cabin by the lake to rest and didn't mind when my son threw up on her rug...
And there was Shannon Johnson that help me set up the HBOT chamber yesterday, and didn't laugh at me when I had a panic attack inside of it...
And there was Jenny for stepping out in front of us moms who were killing ourselves to bring attention to the cause...
And there is every parent who ever sent me an encouraging email...
So to Lisa and all of you since who have made time for me and propped me up with all your encouragement...
Thank You.
I am sorry that you had to be in this club with me, but I am so grateful for all of you.
Chandler had been referred to the state only a few weeks earlier and that very day Scott was with him at his first formal evaluation. It was a lonely day with an overwhelming flood of information that I barely had any context for yet, punctuated by phone calls from Scott and the speech language pathologist to ask questions, and, of course, a lot of tears.
How in the world was I possibly going to be able to do all the things that these people were talking about?
Saturday was much of the same, except not quite so lonely as Scott was able to join me.
That night was one of those conference dinners, and we decided to go to see if we could make contact with someone who was actually managing with it. We plopped down at the first table we walked by and a very friendly woman introduced herself and wanted to know all about us and our son. That is how I met Lisa Ackerman.
She was the first biomed mom that I ever met and God could not have been more gracious to us in choosing her as our first contact. She was cheery and funny and encouraging and answered all our questions and gave us lots of advice and convinced us that night that we could do this. And the thing that she said that convinced me that we could do it was that she noted that I was not at the conference by myself. That my husband was sitting next to me, holding my hand, and that not too many moms at that stage have that kind of support from their husbands right out of the gate. That some dads never joined in and that some dads even left. If they could go it alone and make their kids better, we could certainly manage it together.
Scott and I walked out of that dinner smiling, partnered, and with real hope that we could get our boy to come back to us. And for the most part, he has.
You can look back on life and pick out very important conversations that you know God had to have arranged, because they ended up meaning so much. We call them Divine Appointments.
And Lisa was just the first in a long line of Autism Moms who had time for me.
Shortly thereafter when I started reading the vaccine research and wrestling with the questions of what did the government know and when did they know it, I stumbled across a web site called Safe Minds and dialed the number listed to try to confirm that what I thought had happened had actually happened. The call rang straight through to Lyn Redwood's cell phone and she sat in an airport waiting for a flight and patiently answered freshman questions from a still naive young mom who could not quite wrap her brain around the fact that the government and her own pediatrician would knowingly inject mercury into her babies.
I don't remember the words of the conversation, but I feel like it was something like this:
Me: "...but he told me that they took it out by 2000".
Lyn: "They didn't".
Long pause as I tried to internalize the information.
Me: "But if they tell us not to eat tuna when we are pregnant, why would they let it stay in vaccines?"
Lyn: "We don't know."
Another long pause because I could not really believe it.
Me: "Well what do they say when people ask that question"?
Lyn: "Nothing."
Yet more stunned disbelief....
And then there was the wife of a successful hollywood producer who was the acquaintance of a friend who didn't know me from Adam, that called me out of the blue and insisted that I come over immediately and meet her son. She told me about how he was completely non-verbal and wanted me to see how verbal he was now and tell me about floortime therapy and what schools I should look at and what speech therapists I should try and on and on. She wanted me to see with my own eyes that her son got better and mine could too.
And there was Bobbie Manning who patiently explained to me what the hell was going on in Washington...
And there was Sym Rankin who I called 14 times to figure out how to spell Phosphatidylcholine...
And there was Michele Brock who answered a question on an autism list and told me about the autism services available in the small town in Maine we were thinking of moving to...
And there was Holly Austin who let us come to her cabin by the lake to rest and didn't mind when my son threw up on her rug...
And there was Shannon Johnson that help me set up the HBOT chamber yesterday, and didn't laugh at me when I had a panic attack inside of it...
And there was Jenny for stepping out in front of us moms who were killing ourselves to bring attention to the cause...
And there is every parent who ever sent me an encouraging email...
So to Lisa and all of you since who have made time for me and propped me up with all your encouragement...
I am sorry that you had to be in this club with me, but I am so grateful for all of you.
June 20, 2008
AAP Decides that Insulting Parents Will Increase Vaccination Rates
The American Academy of Pediatrics now recommends (see update) that pediatricians tell parents who don't vaccinate their children that they:
Are "Selfish"
Are "Self-Centered"
Are "Complacent or Lazy"
Are often "Emotional" decision makers
Have "Unacceptable attitudes"
But they do not believe that insulting you like this is in any way coercing you to vaccinate your child.
Further, they kindly tell you that if you decide to only get one or two shots at a time, your child might die, but they are not trying to scare you into sticking to the full CDC schedule.
'Oh... and vaccinate or you are out of our practice and we won't recommend any other docs to you... but seriously... don't feel pressured.'
I have criticized the AAP in the past for making today's vaccine decisions based on the health threats that my father faced when he and his brother contracted polio, and lost their father to the disease, in the epidemic of the 1940's, rather than basing them on the modern heath threats my child, who contracted autism, faces a full sixty years later, in the current epidemic of developmental and immune disorders of the early 21st century.
But now they have topped themselves. In the letter that they are holding out to pediatricians as a model of what to tell their patients (from All Star Pediatrics), they are citing the small pox threat (which was eradicated 30 years ago) that Ben Franklin's son faced, and died from, in 1736!
They reiterate that they believe that neither vaccines nor thimerosal causes autism, or other any other developmental disabilities, and that "ALL children and young adults should receive ALL of the recommended vaccines according to the schedule published by the Centers for Disease Control." [emphasis mine]
This despite the multitude of research to the contrary, and in complete contradiction to the vaccine safety package inserts themselves that list contraindications and say that certain people should not receive certain vaccines.
All this is a part of the collaborative effort between the AAP and other organizations (yes of course Pharma and Paul Offit are among them, I can't believe you even asked) under their new "Childhood Immunization Support Program" or as they might as well call it, "We Know Everything and Parents Are Idiots Program".
Like pediatricians, and many of you reading this, I make my living by providing a service to people. I wonder how many of my clients and potential clients would still want to do business with me if I handed them a letter that in any way even remotely suggested that they were selfish, self-centered, complacent, lazy, emotional people with unacceptable attitudes if they didn't take my recommendations on which services of mine they should purchase? Any one of you wanna give it a try for a week in your business and see what happens?
By digging in and taking this increasingly absurd stance they are not just potentially damaging the vaccine program, they are putting at risk parents trust in their their statements about EVERYTHING. When you stand in front of your doc and hear him make the statement that vaccines have nothing to do with autism, then watch Hannah Poling get a million or so check from the Vaccine Injury Compensation Fund for her "autistic symptoms", then listen to the head of the CDC explain how vaccines cause autism in the presence of mitochondrial disorders on CNN, then go back and ask him about the whole thing and hear him reiterate that vaccines don't cause autism, but this time handing you a piece of paper that insults you, are you going to take his word about about anything else?
What do they plan on doing if the VCIP Omnibus Hearings find for the petitioners with Autism?
Do they understand that they are moving from shooting themselves in the foot to shooting themselves in an artery?
Two weeks ago Jim Carrey asked, "How stupid do you think we are?"
The AAP has answered, "You are so stupid that we can not only keep telling you obviously disprovable lies, but we can also insult you, and you will not only CONTINUE to entrust your children to us, you will pay us money to do it!"
Last April the AAP took the wise step of attending the DAN! conference. They said that they were impressed and thought we were on to something.
I wrote a piece on the AAP's chance to mend the widening rift between parents and pediatricians, and to regain the lost trust that was growing by leaps and bounds due to the obvious overstatements on vaccine safety that they were making to patients and their families.
I warned that they had a small window of opportunity to work to change course, work in good faith, and begin to make statements about the true risks of vaccination that abandons the now untenable assertion that vaccines don't cause autism or contribute to neurodevelopmental disorders. I warned that the window would only be open for a short time unless we saw real action, and would probably close around the time of the Green our Vaccines Rally if they didn't show up for us in some respect.
Well the AAP didn't show up for the rally and well... this certainly signals that the window is closed. They want it closed. And it looks like they may be locking it.
UPDATE:
An addendum to address critique that this post has received elsewhere.
-One person seems to have been concerned that I was personally insulted by the AAP and All Star Pediatrics. I want to assure that I am at peace on the matter. After having my son become sick due to AAP's bad policy, not much that they simply say about me, or people like me, hurts my feelings.
Insults given do not necessarily need to be received.
In my life, personally, I believe it is wise to work toward not being "insulted" by insults. Because really, either the person insulting you is right, and you need to do some self examination and change, or they are wrong, and (to be frank) who cares what they think about you.
In this case, I think that Dr. Dyer and his crew are wrong. Deciding not to vaccinate based on your best judgment is not selfish, self-centered, or a product of 'unacceptable attitudes'. (Come to think of it, how exactly does Dyer and company read minds to know what peoples motives are? Especially people he has never met, as the statement is a blanket one?) We are charged with making the best choices for our kids that we can given the information we have. Reducing that decision making process to the motives Dyer wants to believe are behind those decisions is just speculative bullying and communicates low regard for parents.
Especially parents who are earnestly struggling with the issue.
And it is not me being insulted that is the problem. It is the parents on the vaccine bubble. Treat their legitimate concerns with contempt and you only risk making complete vaccine refusal more widespread.
-Umbrage seems to have been taken at my use of the word "recommends" in the opening sentence, "The American Academy of Pediatrics now recommends that pediatricians tell parents who don't vaccinate their children that they..."
I am making the assumption, a reasonable one I think, that choosing only one medical practices vaccine policy letter to patients (one would think there are a thousand out there to choose from) and placing it prominently both on your newsletter and website whose purpose is to give guidance to pediatricians who are members of the AAP constitutes a 'recommendation'. If not a recommendation, it certainly represents a ringing endorsement.
For the sake of accuracy, I will contact the AAP on Monday and ask that they clarify if this was a 'recommendation' or an 'endorsement'.
But, if we can cut the crap and get real for a moment, it does not matter what semantics the AAP decides to play with this. They are holding it out for their members as an example to be followed and even if they DID run a disclaimer (which they didn't) that they don't recommended the letter at all, the message would still be loud and clear to peds.
'Feel free to insult your patients, use coercion to get them to fully vaccinate and dismiss them if they don't. We might 'have' to officially say don't do it, but really, you won't get any arguments from us! (wink)'
Kinda like the conversation I had with my seven year old yesterday, "Son, it is totally wrong to steal cars. Did I ever tell you about Jonsie "Zoom Zoom" Mcgillicutty? Man that guy was great at stealing cars. Here is what he did... now here is how you jimmy the lock to break in... and here is how you hot wire it... and once you have the car you..."
They can say all day they want their docs to 'work with' parents, but what they DO gives us the real message of what they are all about. And what they have DONE is tell peds how to treat patients with earnest vaccine concerns with contempt.
Addendum:
Links to the AAP Newsletter have disappeared, so I am copying the letter here in case the rest do as well:
"All Star Pediatrics’ Vaccine Policy Statement
Are "Selfish"
Are "Self-Centered"
Are "Complacent or Lazy"
Are often "Emotional" decision makers
Have "Unacceptable attitudes"
But they do not believe that insulting you like this is in any way coercing you to vaccinate your child.
Further, they kindly tell you that if you decide to only get one or two shots at a time, your child might die, but they are not trying to scare you into sticking to the full CDC schedule.
'Oh... and vaccinate or you are out of our practice and we won't recommend any other docs to you... but seriously... don't feel pressured.'
I have criticized the AAP in the past for making today's vaccine decisions based on the health threats that my father faced when he and his brother contracted polio, and lost their father to the disease, in the epidemic of the 1940's, rather than basing them on the modern heath threats my child, who contracted autism, faces a full sixty years later, in the current epidemic of developmental and immune disorders of the early 21st century.
But now they have topped themselves. In the letter that they are holding out to pediatricians as a model of what to tell their patients (from All Star Pediatrics), they are citing the small pox threat (which was eradicated 30 years ago) that Ben Franklin's son faced, and died from, in 1736!
They reiterate that they believe that neither vaccines nor thimerosal causes autism, or other any other developmental disabilities, and that "ALL children and young adults should receive ALL of the recommended vaccines according to the schedule published by the Centers for Disease Control." [emphasis mine]
This despite the multitude of research to the contrary, and in complete contradiction to the vaccine safety package inserts themselves that list contraindications and say that certain people should not receive certain vaccines.
All this is a part of the collaborative effort between the AAP and other organizations (yes of course Pharma and Paul Offit are among them, I can't believe you even asked) under their new "Childhood Immunization Support Program" or as they might as well call it, "We Know Everything and Parents Are Idiots Program".
Like pediatricians, and many of you reading this, I make my living by providing a service to people. I wonder how many of my clients and potential clients would still want to do business with me if I handed them a letter that in any way even remotely suggested that they were selfish, self-centered, complacent, lazy, emotional people with unacceptable attitudes if they didn't take my recommendations on which services of mine they should purchase? Any one of you wanna give it a try for a week in your business and see what happens?
By digging in and taking this increasingly absurd stance they are not just potentially damaging the vaccine program, they are putting at risk parents trust in their their statements about EVERYTHING. When you stand in front of your doc and hear him make the statement that vaccines have nothing to do with autism, then watch Hannah Poling get a million or so check from the Vaccine Injury Compensation Fund for her "autistic symptoms", then listen to the head of the CDC explain how vaccines cause autism in the presence of mitochondrial disorders on CNN, then go back and ask him about the whole thing and hear him reiterate that vaccines don't cause autism, but this time handing you a piece of paper that insults you, are you going to take his word about about anything else?
What do they plan on doing if the VCIP Omnibus Hearings find for the petitioners with Autism?
Do they understand that they are moving from shooting themselves in the foot to shooting themselves in an artery?
Two weeks ago Jim Carrey asked, "How stupid do you think we are?"
The AAP has answered, "You are so stupid that we can not only keep telling you obviously disprovable lies, but we can also insult you, and you will not only CONTINUE to entrust your children to us, you will pay us money to do it!"
Last April the AAP took the wise step of attending the DAN! conference. They said that they were impressed and thought we were on to something.
I wrote a piece on the AAP's chance to mend the widening rift between parents and pediatricians, and to regain the lost trust that was growing by leaps and bounds due to the obvious overstatements on vaccine safety that they were making to patients and their families.
I warned that they had a small window of opportunity to work to change course, work in good faith, and begin to make statements about the true risks of vaccination that abandons the now untenable assertion that vaccines don't cause autism or contribute to neurodevelopmental disorders. I warned that the window would only be open for a short time unless we saw real action, and would probably close around the time of the Green our Vaccines Rally if they didn't show up for us in some respect.
Well the AAP didn't show up for the rally and well... this certainly signals that the window is closed. They want it closed. And it looks like they may be locking it.
UPDATE:
An addendum to address critique that this post has received elsewhere.
-One person seems to have been concerned that I was personally insulted by the AAP and All Star Pediatrics. I want to assure that I am at peace on the matter. After having my son become sick due to AAP's bad policy, not much that they simply say about me, or people like me, hurts my feelings.
Insults given do not necessarily need to be received.
In my life, personally, I believe it is wise to work toward not being "insulted" by insults. Because really, either the person insulting you is right, and you need to do some self examination and change, or they are wrong, and (to be frank) who cares what they think about you.
In this case, I think that Dr. Dyer and his crew are wrong. Deciding not to vaccinate based on your best judgment is not selfish, self-centered, or a product of 'unacceptable attitudes'. (Come to think of it, how exactly does Dyer and company read minds to know what peoples motives are? Especially people he has never met, as the statement is a blanket one?) We are charged with making the best choices for our kids that we can given the information we have. Reducing that decision making process to the motives Dyer wants to believe are behind those decisions is just speculative bullying and communicates low regard for parents.
Especially parents who are earnestly struggling with the issue.
And it is not me being insulted that is the problem. It is the parents on the vaccine bubble. Treat their legitimate concerns with contempt and you only risk making complete vaccine refusal more widespread.
-Umbrage seems to have been taken at my use of the word "recommends" in the opening sentence, "The American Academy of Pediatrics now recommends that pediatricians tell parents who don't vaccinate their children that they..."
I am making the assumption, a reasonable one I think, that choosing only one medical practices vaccine policy letter to patients (one would think there are a thousand out there to choose from) and placing it prominently both on your newsletter and website whose purpose is to give guidance to pediatricians who are members of the AAP constitutes a 'recommendation'. If not a recommendation, it certainly represents a ringing endorsement.
For the sake of accuracy, I will contact the AAP on Monday and ask that they clarify if this was a 'recommendation' or an 'endorsement'.
But, if we can cut the crap and get real for a moment, it does not matter what semantics the AAP decides to play with this. They are holding it out for their members as an example to be followed and even if they DID run a disclaimer (which they didn't) that they don't recommended the letter at all, the message would still be loud and clear to peds.
'Feel free to insult your patients, use coercion to get them to fully vaccinate and dismiss them if they don't. We might 'have' to officially say don't do it, but really, you won't get any arguments from us! (wink)'
Kinda like the conversation I had with my seven year old yesterday, "Son, it is totally wrong to steal cars. Did I ever tell you about Jonsie "Zoom Zoom" Mcgillicutty? Man that guy was great at stealing cars. Here is what he did... now here is how you jimmy the lock to break in... and here is how you hot wire it... and once you have the car you..."
They can say all day they want their docs to 'work with' parents, but what they DO gives us the real message of what they are all about. And what they have DONE is tell peds how to treat patients with earnest vaccine concerns with contempt.
Addendum:
Links to the AAP Newsletter have disappeared, so I am copying the letter here in case the rest do as well:
"All Star Pediatrics’ Vaccine Policy Statement
Editor’s note: The following document is available for download on
the AAP
Member Center
allstarpediatrics.doc, and may be adapted for use by practices.
We firmly believe in the effectiveness of
vaccines to prevent serious
illness and to save lives.
We firmly believe in the safety of our
vaccines.
We firmly believe that all children and young
adults should receive
all of the recommended vaccines according to
the schedule published
by the Centers for Disease Control and the American Academy
of Pediatrics.
We firmly believe, based on all available
literature, evidence and
current studies, that vaccines do not cause
autism or other developmental
disabilities. We firmly believe that
thimerosal, a preservative
that has been in vaccines for decades and
remains in some vaccines,
does not cause autism or other developmental
disabilities.
We firmly believe that vaccinating children
and young adults may
be the single most important health-promoting
intervention we perform
as health care providers, and that you can
perform as parents/
caregivers. The recommended vaccines and their
schedule given
are the results of years and years of
scientific study and data-gathering
on millions of children by thousands of our
brightest scientists
and physicians.
These things being said, we recognize that
there has always been
and will likely always be controversy
surrounding vaccination. Indeed,
Benjamin Franklin, persuaded by his brother,
was opposed to smallpox
vaccine until scientific data convinced him
otherwise. Tragically,
he had delayed inoculating his favorite son
Franky, who contracted
smallpox and died at the age of 4, leaving Ben
with a lifetime
of guilt and remorse. Quoting Mr. Franklin’s
autobiography:
In 1736, I lost one of my sons, a fine boy of four years old, by
the
smallpox…I long regretted bitterly, and still regret that I had
not given
it to him by inoculation. This I mention for the sake of parents
who omit
that operation, on the supposition that they should never
forgive themselves
if a child died under it, my example showing that the regret may
be the same either way, and that, therefore, the safer should be
chosen.
The vaccine campaign is truly a victim of its
own success. It is
precisely because vaccines are so effective at
preventing illness that
we are even discussing whether or not they
should be given. Because
of vaccines, many of you have never seen a
child with polio, tetanus,
whooping cough, bacterial meningitis or even
chickenpox, or known
a friend or family member whose child died of
one of these diseases.
Such success can make us complacent or even
lazy about vaccinating.
But such an attitude, if it becomes
widespread, can only lead to
tragic results.
Over the past several years, many people in Europe have chosen
not to vaccinate their children with the MMR
vaccine af ter publication
of an unfounded suspicion (later re tracted)
that the vaccine
caused autism. As a result of
underimmunization, there have been
small outbreaks of measles and several deaths
from complications of
measles in Europe
over the past several years.
Furthermore, by not vaccinating your child you
are taking selfish
advantage of thousands of others who do
vaccinate their children,
which decreases the likelihood that your child
will contract
one of these diseases. We feel such an
attitude to be self-centered and
unacceptable.
We are making you aware of these facts not to
scare you or coerce
you, but to emphasize the importance of vaccinating
your child.
We recognize that the choice may be a very
emotional one for some
parents. We will do everything we can to
convince you that vaccinating
according to the schedule is the right thing
to do. However,
should you have doubts, please discuss these
with your health care
provider in advance of your visit. In some cases, we may alter the
schedule to accommodate parental concerns or
reservations. Please
be advised, however, that delaying or “breaking
up the vaccines”
to give one or two at a time over two or more
visits goes against
expert recommendations, and can put your
child at risk for serious
illness (or even death) and goes against our
medical advice as
providers at All Star Pediatrics. Such additional visits will require
additional co-pays on your part. Furthermore,
please realize that
you will be required to sign a “Refusal to
Vaccinate” acknowledgement
in the event of lengthy delays.
Finally, if you should absolutely refuse to
vaccinate your child
despite all our efforts, we will ask you to
find another health care
provider who shares your views. We do not keep
a list of such
providers, nor would we recommend any such
physician. Please recognize
that by not vaccinating you are putting your
child at unnecessary
risk for life-threatening illness and
disability, and even death.
As medical professionals, we feel very
strongly that vaccinating
children on schedule with currently available
vaccines is absolutely
the right thing to do for all children and
young adults. Thank you
for your time in reading this policy, and
please feel free to discuss
any questions or concerns you may have about
vaccines with any
one of us.
Sincerely,
Bradley J. Dyer, M.D.
Jennifer Melnychuk, M.D.
Robert C. Duncheskie,
M.D."
June 19, 2008
Ginger Taylor, BS, MS, AM
Recently I was preparing a list of bios in order to introduce a group of researchers to one another, most of whom were autism parents. I listed their credentials and then wrote "Autism Mom" or "Autism Dad" following.
Then it occurred to me that those titles really should be part of their credentials. You certainly learn more in a year of autism parenting than you learn in a year of schooling.
So I am proposing that we start listing our hard earned credentials. Add A.M. or A.D. to the end of your alphabet soup.
You sure as hell have earned it.
Then it occurred to me that those titles really should be part of their credentials. You certainly learn more in a year of autism parenting than you learn in a year of schooling.
So I am proposing that we start listing our hard earned credentials. Add A.M. or A.D. to the end of your alphabet soup.
You sure as hell have earned it.
May 11, 2005
Letting Go Of Chandler
From the day our children are born, we have to begin letting go of them.
Our instinct as parents is to hold on tight and protect them from the harsh world and tell them where to go and what choices to make because we know better than they do. But if we are to serve them we have to let go of them just a little bit at a time as they begin to master their own lives, occasionally stepping back in when they are having trouble navigating (done with most frequency between the ages of 14 and 16).
My sons are 3 and 4 1/2 and at this stage of parenting I should still be able to, as my friends can, languish in that "My Boy's Gonna Be The President" dream where the possibilities of what they will become are wide open. The natural progression of parenting seems to be that as your child grows, and as the two of you get to know the person that they are (and are becoming), that field possibilities narrows. It happens gradually as you as a parent mature gradually, (hopefully) becoming more trusting of your child's decisions and less needy of having your child be The President. Then, eventually, your child is 16 and you don't so much need him to be The President as much as you need him to remember to clean his room and bring home the car in one piece.
When you find out that your son has Autism, you have to do 20 or so years of maturing in one day. You have to let go of all the expectations that you have for him, and for what you thought the rest of your life would be like. There is no 'growing out of' the adolescent fantasies that you have carried around for years, the rose colored glasses are just ripped right off, and it is painful.
It is painful, but not necessarily a bad thing.
Learning to give up some of the things that you have always wanted and face reality can be a gift. It has been a year since we found out about Chandler's Autism, and I am at the point of having gone down the path just far enough to look back and see how far I have come. Not how far Chandler has come in his "recovery", but how far I have come as a mom and a person and a grown-up.
I was fortunate to grow up in a church that had a lot of good teaching and preparing for life stuff. One of the great perspectives I learned on parenting when I was still a teenager was the idea that our children are not really ours. They are a gift from God. That they are his and he has entrusted us with their care. The idea that he has trusted these precious little ones is both a huge responsibility and a huge relief for me, because it reframes parenting in a really balanced way.
It describes a relationship to them in which I am responsible for their upbringing, but God is responsible for their life. That I am to love them and mold their character, but God is responsible for their destiny. I am merely preparing them for the journey that they will walk with God, and He will be there with them on that journey when I fail them, or when I am long gone.
For me that is freeing because it relieves me of the panic that presses on me when I begin to feel that I am responsible for the men these boys will become and if I screw up then they are doomed. (Any one else feel like that sometimes or is it just me?)
While I thought that I was pretty good compared to most mom's at "holding my children with an open hand", Chandler's diagnosis exposed my still much too fantasy based grip on My Children. After all, if I truly believed that my children were are gift from God for me to raise to the best of my ability and then offer back to him, then why would it matter quite so much to me that my boy is so different from all the other little boys. Certainly I would worry for him, but even then, if I trust that God made Chandler just as he wanted him to be, and had charted out his own distinct journey, should I not be able to trust Him that He will take care of this little life that He loves even more than I do?
Hudson Taylor wrote:
I am a Christian. Years ago I stepped up to God and, in gratitude for his love and sacrifice for me, handed my life back to him. As Isaiah did after meeting God, I said, "Here am I. Send me." If I really meant it, then it should matter little where he sends me, or what hardships I face. I volunteered for service, and was given a very important assignment, to serve my wonderful family and my precious boys.
I have a very wise friend named Judy Nelson. When I was in college, and writhing in pain over men and stricken with panic and fear of the future, Judy used to say, "Ginger, it all comes down to whether or not you really believe that God is committed to your best interest". Her challenge rings in my head a lot these days.
If I really believe that he is committed to my best interest, and that he really loves my children more than I ever could, then despite the very natural instinct that I have as a mother to worry about my boys, I must know that everything is fine, because it is as God has had planned all along. And God can be trusted with my boys.
So this is where we circle back around to Letting Go of Chandler. When I look at the gorgeous faces of Webster and Chandler, the love that I feel for them is practically brain melting. The thought of them going out into the world gives me a stomach ache, but the harsh revelation of our little one's "specialness" is an early reminder that our job is to get them ready to do just that, be able to go out into the world and set off on a journey that we can't really go with them on. ("Ships are safe in the harbor, but that is not what ships are for") Webster is benefiting in that I spend much more time thinking much farther ahead for him than I would have, had we still been allowed to loiter in "President Taylor" land.
So I am trying to learn to 'let go' of Chandler even as my love for him grows. I am trying to learn to serve him rather than serving my own ego's idea of what my son should be. The better I get at it, the more I see the poetry that Chandler is.
Our instinct as parents is to hold on tight and protect them from the harsh world and tell them where to go and what choices to make because we know better than they do. But if we are to serve them we have to let go of them just a little bit at a time as they begin to master their own lives, occasionally stepping back in when they are having trouble navigating (done with most frequency between the ages of 14 and 16).
My sons are 3 and 4 1/2 and at this stage of parenting I should still be able to, as my friends can, languish in that "My Boy's Gonna Be The President" dream where the possibilities of what they will become are wide open. The natural progression of parenting seems to be that as your child grows, and as the two of you get to know the person that they are (and are becoming), that field possibilities narrows. It happens gradually as you as a parent mature gradually, (hopefully) becoming more trusting of your child's decisions and less needy of having your child be The President. Then, eventually, your child is 16 and you don't so much need him to be The President as much as you need him to remember to clean his room and bring home the car in one piece.
When you find out that your son has Autism, you have to do 20 or so years of maturing in one day. You have to let go of all the expectations that you have for him, and for what you thought the rest of your life would be like. There is no 'growing out of' the adolescent fantasies that you have carried around for years, the rose colored glasses are just ripped right off, and it is painful.
It is painful, but not necessarily a bad thing.
Learning to give up some of the things that you have always wanted and face reality can be a gift. It has been a year since we found out about Chandler's Autism, and I am at the point of having gone down the path just far enough to look back and see how far I have come. Not how far Chandler has come in his "recovery", but how far I have come as a mom and a person and a grown-up.
I was fortunate to grow up in a church that had a lot of good teaching and preparing for life stuff. One of the great perspectives I learned on parenting when I was still a teenager was the idea that our children are not really ours. They are a gift from God. That they are his and he has entrusted us with their care. The idea that he has trusted these precious little ones is both a huge responsibility and a huge relief for me, because it reframes parenting in a really balanced way.
It describes a relationship to them in which I am responsible for their upbringing, but God is responsible for their life. That I am to love them and mold their character, but God is responsible for their destiny. I am merely preparing them for the journey that they will walk with God, and He will be there with them on that journey when I fail them, or when I am long gone.
For me that is freeing because it relieves me of the panic that presses on me when I begin to feel that I am responsible for the men these boys will become and if I screw up then they are doomed. (Any one else feel like that sometimes or is it just me?)
While I thought that I was pretty good compared to most mom's at "holding my children with an open hand", Chandler's diagnosis exposed my still much too fantasy based grip on My Children. After all, if I truly believed that my children were are gift from God for me to raise to the best of my ability and then offer back to him, then why would it matter quite so much to me that my boy is so different from all the other little boys. Certainly I would worry for him, but even then, if I trust that God made Chandler just as he wanted him to be, and had charted out his own distinct journey, should I not be able to trust Him that He will take care of this little life that He loves even more than I do?
Hudson Taylor wrote:
...the rest which full identification with Christ brings. I am no longer anxious about anything, as I realize this; for He, I know, is able to carry out His will, and His will is mine. It makes no matter where He places me, or how. That is rather for Him to consider than for me; for in the easiest position He must give me His grace, and in the most difficult, His grace is sufficient.
It matters little to my servant whether I send him to buy a few cash worth of things, or the most expensive articles. In either case he looks to me for the money and brings me his purchases. So, if God should place me in serious perplexity, must He not me much guidance; in positions of great difficulty, much grace; in circumstances of great pressure and trial, much strength? No fear that His resources will prove unequal to the emergency! And His resources are mine, for He is mine, and is with me and dwells in me.
I am a Christian. Years ago I stepped up to God and, in gratitude for his love and sacrifice for me, handed my life back to him. As Isaiah did after meeting God, I said, "Here am I. Send me." If I really meant it, then it should matter little where he sends me, or what hardships I face. I volunteered for service, and was given a very important assignment, to serve my wonderful family and my precious boys.
I have a very wise friend named Judy Nelson. When I was in college, and writhing in pain over men and stricken with panic and fear of the future, Judy used to say, "Ginger, it all comes down to whether or not you really believe that God is committed to your best interest". Her challenge rings in my head a lot these days.
If I really believe that he is committed to my best interest, and that he really loves my children more than I ever could, then despite the very natural instinct that I have as a mother to worry about my boys, I must know that everything is fine, because it is as God has had planned all along. And God can be trusted with my boys.
So this is where we circle back around to Letting Go of Chandler. When I look at the gorgeous faces of Webster and Chandler, the love that I feel for them is practically brain melting. The thought of them going out into the world gives me a stomach ache, but the harsh revelation of our little one's "specialness" is an early reminder that our job is to get them ready to do just that, be able to go out into the world and set off on a journey that we can't really go with them on. ("Ships are safe in the harbor, but that is not what ships are for") Webster is benefiting in that I spend much more time thinking much farther ahead for him than I would have, had we still been allowed to loiter in "President Taylor" land.
So I am trying to learn to 'let go' of Chandler even as my love for him grows. I am trying to learn to serve him rather than serving my own ego's idea of what my son should be. The better I get at it, the more I see the poetry that Chandler is.
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