Three years....it's been darn near three years since I blogged. While some things change, some things regrettably stay the same. In the course of attending dozens of IEP/Case Conference Committee meetings with parents each year, I couldn't help but notice that certain ridiculous statements are uttered on a pretty regular basis. Enjoy! And oh yeah....I'm not paranoid about the anonymity thing anymore. ;)Saturday, January 23, 2016
IEP Drinking Game
Three years....it's been darn near three years since I blogged. While some things change, some things regrettably stay the same. In the course of attending dozens of IEP/Case Conference Committee meetings with parents each year, I couldn't help but notice that certain ridiculous statements are uttered on a pretty regular basis. Enjoy! And oh yeah....I'm not paranoid about the anonymity thing anymore. ;)
Friday, March 29, 2013
Vaccines and Autism
I am a little hesitant to address such a controversial topic, as there are few more polarizing issues out there than vaccines. But with the "study" released this week stating again that there is no causative link between childhood vaccines and autism, I decided to cautiously take it up. If you look at how this study is conducted, you will see that it was, at the least, poor science. Google it, go ahead, I'm moving on.
I am often asked where I stand on vaccines. If I had the chance to do it over again, would I still have my children vaccinated?? The answer is yes....but I would go about it in an entirely different way. In saying something as middle of the road as the prior sentence, I have pissed off not one side or the other, but likely both. People on both sides are passionate about this issue, and with good reason. Doctors and scientists that have staked their careers on improving public health cite vaccines as medicines' great victory....and they are right. Parents who have watched their children regress into autism after receiving vaccines or who are otherwise harmed by vaccines (and it DOES happen) argue that there is a percentage of the population for whom vaccines are nothing short of poison....and they are right. But what so many overlook is the very real possibility of being somewhere in between.
It has been argued by a great number of Drs and scientists that mothers of this generation are oblivious to the dangers of vaccine-preventable illnesses, as the vaccines have done their job and all but wiped these diseases out. I have an amazing uncle that is a polio survivor. I also had the misfortune of catching chicken pox as a freshman in college, and I had it BAD. So as a young mother, I was sold on vaccines. My babies both received the Hep B vaccine as newborns. I didn't even question it. And I kept them both on the recommended vaccination schedule....for a while.
We watched Son 2 regress into autism starting at about 7 months old, and he continued to deteriorate until we started the GFCF diet after his diagnosis at age 2 1/2. Regressive autism is so incredibly painful....indescribable, really. We had a perfect, happy baby whose face lit up when he saw us, and over that two year period we lost him a little more every single day. His smile had become a distant memory and the light in his eyes was gone. Every attempt to connect with him was met with a shrill scream and self-injury. It was as though our child had been kidnapped, even though he was still physically with us. We loved him as is, but grieved for the child we once had. Son 1 was typically developing, albeit with a few quirks, until he received the shots required to go to Kindergarten. By this time, I had started researching vaccines and autism, but felt I didn't have the right to question our pediatrician. After all, didn't he have my childrens' best interest at heart? First do no harm, right?? When I saw the needle enter my sons' thigh, I nearly got sick, which was a foreshadowing of what was to come. The weeks following that round of vaccines lauched us into the summer from hell. Son 1 became terribly aggressive, and I was usually his target. He was diagnosed with Asperger's that July. He too improved dramatically on the GFCF diet and DAN protocol.
With that said, yes, I would still vaccinate my children, but I would do so differently. When my generation was growing up, we received single dose vials, not the combination shots that are the ONLY option now. That is a real shame, as combining the shots increases the risk. There are multiple studies that document this. But new mommies are relieved when they hear "fewer needles". We also got FAR fewer vaccinations than our children do, many are new to this generation, which are the ones I would now opt out of. The chicken pox vaccine is a great example. Since I got such a terrible case of the chicken pox, I jumped for joy when this vaccine came out, and proudly took each of my boys in shortly after their first birthdays to receive it, beaming that they would be protected. BOTH of my boys got chicken pox exactly a week after the vaccine. Son 1 got a very mild case, Son 2's was less mild. I argued with my pediatrician that it could not be a coincidence, but in the end, I deferred to her expertise. Did you know that the vast majority (85-90%) of people have built up immunity after the first round of vaccinations? It's true. Why do we revaccinate, not once, but twice?? Because it's CHEAPER than testing for titer levels. SERIOUSLY. Given a "do-over" I would have had them tested for the titer that likely existed after the first shot instead of simply subjecting them to another round. We did this with Son 2, as he did NOT get his Kindergarten shots, and he does, in fact, have titer levels for vaccine preventable diseases. The third precaution I would take is an alternative (delayed) schedule. There is science to prove that spreading the shots out over a longer period of time drastically reduces the potential for harm. Yet a large number of doctors completely reject the idea that vaccines could be harmful EVER. Upon refusing to further vaccinate Son 2, we were asked to leave the pediatrician that my boys had seen their entire lives. I made an appointment at several others and was told the same, that under-vaccinated children were not welcome. Can you imagine? I finally settled on a Dr that was amenable to agreeing to disagree. Over the past five years, more doctors have started to see the light and embrace an alternative vaccination schedule in an effort to respect (or appease maybe) parents' (justifiable) concerns over vaccines. And a select few are recognizing that vaccines simply aren't appropriate for a certain population of kids. That's a win-win-win situation.
I am often asked where I stand on vaccines. If I had the chance to do it over again, would I still have my children vaccinated?? The answer is yes....but I would go about it in an entirely different way. In saying something as middle of the road as the prior sentence, I have pissed off not one side or the other, but likely both. People on both sides are passionate about this issue, and with good reason. Doctors and scientists that have staked their careers on improving public health cite vaccines as medicines' great victory....and they are right. Parents who have watched their children regress into autism after receiving vaccines or who are otherwise harmed by vaccines (and it DOES happen) argue that there is a percentage of the population for whom vaccines are nothing short of poison....and they are right. But what so many overlook is the very real possibility of being somewhere in between.
It has been argued by a great number of Drs and scientists that mothers of this generation are oblivious to the dangers of vaccine-preventable illnesses, as the vaccines have done their job and all but wiped these diseases out. I have an amazing uncle that is a polio survivor. I also had the misfortune of catching chicken pox as a freshman in college, and I had it BAD. So as a young mother, I was sold on vaccines. My babies both received the Hep B vaccine as newborns. I didn't even question it. And I kept them both on the recommended vaccination schedule....for a while.
We watched Son 2 regress into autism starting at about 7 months old, and he continued to deteriorate until we started the GFCF diet after his diagnosis at age 2 1/2. Regressive autism is so incredibly painful....indescribable, really. We had a perfect, happy baby whose face lit up when he saw us, and over that two year period we lost him a little more every single day. His smile had become a distant memory and the light in his eyes was gone. Every attempt to connect with him was met with a shrill scream and self-injury. It was as though our child had been kidnapped, even though he was still physically with us. We loved him as is, but grieved for the child we once had. Son 1 was typically developing, albeit with a few quirks, until he received the shots required to go to Kindergarten. By this time, I had started researching vaccines and autism, but felt I didn't have the right to question our pediatrician. After all, didn't he have my childrens' best interest at heart? First do no harm, right?? When I saw the needle enter my sons' thigh, I nearly got sick, which was a foreshadowing of what was to come. The weeks following that round of vaccines lauched us into the summer from hell. Son 1 became terribly aggressive, and I was usually his target. He was diagnosed with Asperger's that July. He too improved dramatically on the GFCF diet and DAN protocol.
With that said, yes, I would still vaccinate my children, but I would do so differently. When my generation was growing up, we received single dose vials, not the combination shots that are the ONLY option now. That is a real shame, as combining the shots increases the risk. There are multiple studies that document this. But new mommies are relieved when they hear "fewer needles". We also got FAR fewer vaccinations than our children do, many are new to this generation, which are the ones I would now opt out of. The chicken pox vaccine is a great example. Since I got such a terrible case of the chicken pox, I jumped for joy when this vaccine came out, and proudly took each of my boys in shortly after their first birthdays to receive it, beaming that they would be protected. BOTH of my boys got chicken pox exactly a week after the vaccine. Son 1 got a very mild case, Son 2's was less mild. I argued with my pediatrician that it could not be a coincidence, but in the end, I deferred to her expertise. Did you know that the vast majority (85-90%) of people have built up immunity after the first round of vaccinations? It's true. Why do we revaccinate, not once, but twice?? Because it's CHEAPER than testing for titer levels. SERIOUSLY. Given a "do-over" I would have had them tested for the titer that likely existed after the first shot instead of simply subjecting them to another round. We did this with Son 2, as he did NOT get his Kindergarten shots, and he does, in fact, have titer levels for vaccine preventable diseases. The third precaution I would take is an alternative (delayed) schedule. There is science to prove that spreading the shots out over a longer period of time drastically reduces the potential for harm. Yet a large number of doctors completely reject the idea that vaccines could be harmful EVER. Upon refusing to further vaccinate Son 2, we were asked to leave the pediatrician that my boys had seen their entire lives. I made an appointment at several others and was told the same, that under-vaccinated children were not welcome. Can you imagine? I finally settled on a Dr that was amenable to agreeing to disagree. Over the past five years, more doctors have started to see the light and embrace an alternative vaccination schedule in an effort to respect (or appease maybe) parents' (justifiable) concerns over vaccines. And a select few are recognizing that vaccines simply aren't appropriate for a certain population of kids. That's a win-win-win situation.
Friday, July 13, 2012
Spare the Rod, Spoil the Child??
Yesterday, someone close to our family made a comment about Son 2's worsening verbal and physical aggression. Her suggestion was that just because he had autism doesn't mean that he doesn't need a good spanking. This is paraphrasing, because it was said to DH, not me. If this comment had come from a stranger (or someone else whose path I would cross infrequently), I would have simply returned fire and forgotten about it. But this is someone who I am in contact with several times a week. I knew if I didn't address it, I would just keep stewing over it and it would cause hard feelings between us, which is the last thing I wanted. In an effort to be diplomatic, I found an appropriate article online that discussed general autism myths vs. facts and taped a copy to her front door. She called me an hour later, we had a really lovely chat, and all is forgiven.
As you might have guessed, one of the myths was that kids with autism just need more discipline, including a swat on the rear. I am not a fan of spanking for ANY child. All the research out there tells us that positive behavioral supports are more effective for shaping the behavior of all children, which is why punitive based school-wide behavior systems drive me crazy, but I digress. A huge part of autism is difficulty understanding the behavior of other people, particulary in response to their own behaviors. Many of our kiddos (including Son 2) would not understand why he was being punished. He would just be afraid of me. After spending the first 3.5 years of his life getting him to trust me, I would never purposely shake his trust in me. Furthermore, if I were to spank him, what else would he likely learn?? That is is A-OK to hit when you are angry! Ummm...NO! That is not OK for ANYONE!
As you might have guessed, one of the myths was that kids with autism just need more discipline, including a swat on the rear. I am not a fan of spanking for ANY child. All the research out there tells us that positive behavioral supports are more effective for shaping the behavior of all children, which is why punitive based school-wide behavior systems drive me crazy, but I digress. A huge part of autism is difficulty understanding the behavior of other people, particulary in response to their own behaviors. Many of our kiddos (including Son 2) would not understand why he was being punished. He would just be afraid of me. After spending the first 3.5 years of his life getting him to trust me, I would never purposely shake his trust in me. Furthermore, if I were to spank him, what else would he likely learn?? That is is A-OK to hit when you are angry! Ummm...NO! That is not OK for ANYONE!
Thursday, June 21, 2012
It Takes A Village
It takes a village to raise a child. We've all heard that, but when your child has autism, your village is really tiny or non-existent. Usually. This is where we have been really blessed. While at VBS this morning, Son 2 lost his mind over the skin on his finger under a Band-Aid having turned white. He literally thought he was going to die. He went from zero to meltdown in less than 10 seconds, while I was occupied helping out. I sent him to his safe place in the building and I could still hear him 10 minutes later. What is amazing is that everyone followed my lead and ignored him. No trying to coerce him, bribe him, etc., and nobody questioned my actions or judged me......WHOOP!! Once it was over, one of the older ladies said, "I don't know what set him off, but I'm glad he's better now". Me too...I love my church family!
Tuesday, June 19, 2012
Warrior or Victim??
OK, so the webcasts from Autism One are up, and it seems that Jenny McCarthy has managed to piss off a ton of autism parents with the following:
“This is something I touch about every year on - and that's the Victim Moms vs the Warrior Moms. And you're both out there, so hopefully you can recognize yourself if you are a Victim Mom after I explain this. Um, when our kid gets diagnosed, obviously I think we all fall into that same thinking of “Oh my god, I'm going to ...die. Not my kid. What am I going to do?” And there's this part that takes place - a moment where you have to decide, are you going to take charge? Are you going to give it everything you possibly can to save your kid? And then something surprising happens with a lot of other moms. They - this is all subconsciously, but they fall into this victim role and they like it."
Now, before you get pissed, watch it in context here.
Here is my take. "Warrior Mom" has come to mean a Mom who is doing biomedical interventions and/or the DAN (Defeat Autism Now) protocol. But I don't think that needs to be the exclusive definition. To me, a Warrior Mom is the one who is fighting for and advocating for her child in every possible capacity: at the Dr's office, in the community, in every stinking IEP meeting. She refuses to settle for the way things are and is continually raising the bar, challenging her child and everyone around him/her to do better. And a Victim Mom is one to throw her hands up and say "it is what it is and I can't change it." And guess what autism moms?? They both live in all of us!! THAT'S THE POINT! You choose (daily) which one you will be, and we need to be concious of it. As fierce of an advocate as I am, I have days where I fall into being the victim (though they are few and far between). But overall, I simply refuse to accept that this is as good as it gets, and that is what keeps me going, and by the grace of God, has lead to such huge improvements in my boys. Don't underestimate the power of attitude!
“This is something I touch about every year on - and that's the Victim Moms vs the Warrior Moms. And you're both out there, so hopefully you can recognize yourself if you are a Victim Mom after I explain this. Um, when our kid gets diagnosed, obviously I think we all fall into that same thinking of “Oh my god, I'm going to ...die. Not my kid. What am I going to do?” And there's this part that takes place - a moment where you have to decide, are you going to take charge? Are you going to give it everything you possibly can to save your kid? And then something surprising happens with a lot of other moms. They - this is all subconsciously, but they fall into this victim role and they like it."
Now, before you get pissed, watch it in context here.
Here is my take. "Warrior Mom" has come to mean a Mom who is doing biomedical interventions and/or the DAN (Defeat Autism Now) protocol. But I don't think that needs to be the exclusive definition. To me, a Warrior Mom is the one who is fighting for and advocating for her child in every possible capacity: at the Dr's office, in the community, in every stinking IEP meeting. She refuses to settle for the way things are and is continually raising the bar, challenging her child and everyone around him/her to do better. And a Victim Mom is one to throw her hands up and say "it is what it is and I can't change it." And guess what autism moms?? They both live in all of us!! THAT'S THE POINT! You choose (daily) which one you will be, and we need to be concious of it. As fierce of an advocate as I am, I have days where I fall into being the victim (though they are few and far between). But overall, I simply refuse to accept that this is as good as it gets, and that is what keeps me going, and by the grace of God, has lead to such huge improvements in my boys. Don't underestimate the power of attitude!
Sunday, June 10, 2012
Control?
Sometimes I feel like I'm the only one who really gets it. I'm the only one who understands why things need to go the way I've got them set up. The way I do things is not out of my desire to control things. In fact, I have no say in much of what goes on around here. It is simply what needs to happen to make the boys comfortable so they can function. DH tries....most of the time. But from time to time, he still tries to exert pressure to make things the way HE thinks they should be, not necessarily the way they are. Then all of us (mostly me) deal with the fallout from that for days, if not weeks. Control is an illusion. A bad day is a bad day, and a good day is a bad day waiting to happen.
Thursday, June 7, 2012
Honesty.....Brutal or Refreshing??
The Son 1 saga continues....after a month of what seemed like a miraculous recovery, he is sick again this week. Today brought symptoms that necessitated an ER run, naturally when Doting Husband is 300 miles away, so Son 2 was stuck coming with us. NOW, I am lucky enough to have several people that have offered to help, but seriously....Son 2 has moderate autism, asthma, and life-threatening food allergies, so I am leery about leaving him with anyone outside a select few people that I know are capable of handling that particular combo. I wanted to wait to lean on them in the event that Son 1 was admitted. :) We have learned that Son 1 internalizes stress and anxiety....FAR more than we ever thought possible, and that contributes to his medical issues. While in the ER, he started presenting with intense pain which was not present when we walked in the door. Unlike anything I had since since....oh yeah, the last time he was in the hospital!! On that occassion, he was admitted and they ran a bunch of tests that were fine, and got him on an appropriate course of treatment. Today, they again suggested admitting him, in spite of normal tests, simply based on his pain level. OF COURSE if I thought he needed to stay, I would have pulled out all the stops, called in every favor I had, and asked DH to rent a car and drive home. As it was, I asked the Dr's (all 4 of them, as he knows how to gain an audience) if I could try taking him home to see if he could be made comfortable in familiar surroundings. I further explained that being in the hospital alone seemed to be making him worse, and that I would, of course bring him back on a direct admit if he did not improve or got worse. They asked me to step out in the hallway so we could talk more, and at this point Son 2's cheese was about to fall of his cracker. He was on sensory overload, hungry, and worried about his brother. The Dr's wanted to know if he was OK, and I said "I think so. He has autism, so he's having a hard time with the noise level in the room." Then one of the Dr's reached over and PATTED HIM ON THE BACK!! Aaaaccckk! Son 2 ducked under his arm and screamed like a banchee. I looked at him and said "DUDE!! Did I not JUST finish saying that he's autistic? No touching unless you want him to REALLY lose it." I got a blank stare. I further stated "You work in one of the top children's hospitals in the country that has a prestigious autism clinic. Maybe you need to go up there and get some training." He apologized and excused himself to go to see another patient. One of the others looked at me and said "You go girl! I love moms who are straight shooters!" I thanked her, walked back in the room, and told Son 1, "We're going home, so you need to get yourself together." IT WORKED!!! He's been fine since.....how bizarre. But hey, we're pretty used to bizarre in this house.
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