Wednesday, November 28, 2012

Juicing and the Modern American Family

The shown pile of Veggies yielded the two glasses of juice in the bottom picture!

I love juicing!  And no, I'm not talking about "juicing" the way Lance Armstrong probably does.

I'm literally talking about taking veggies, juicing them and feeding this to your family.

We used to be a fairly sickly family. Biomedical treatment for their autism has completely turned this around for my boys and was my first big "wow". We are so much healthier now. And I think juicing has added to this and taken us to a whole other level.

Let me put "sickly" in some context for you. Kieran missed over 15 days of school his kindergarten year. Cam missed 17.  Last year, Kieran's 3rd grade year,he missed 5 days and I think Cam was absent 4 days for his 1st Grade year.

Fevers, colds, ear infections, strep, sore throats, stomach flus, viral and bacterial--you name it. Kiki would have them all the time. And if Kiki had it, we pretty much all got it. Winter was my least favorite time of year, mostly because we were always sick!

But then we started  biomed, and that completely changed. Supplements boosted Kiki's immune system and he stayed healthy. Oh, he did still catch colds, but they were the run-of-the-mill colds that you get from time to time and we really not a big deal.  And they were much fewer and farther between.

We coasted along like that for a while. And while we were much better than we were, we still dealt with colds and strep, especially Blythe (my NT kiddo) oddly enough.

But then, this Spring, we started juicing, and it's been a big LOVE Fest since. Seriously. Even my husband is into it, and I've yet to meet a man who hates his veggies more than Dave.

When I first got the idea of juicing, I researched carefully and decided on an extruder juicer, which is this one to the right here. It's particularly good at extracting juice from greens. The cons are that it's a little slow and not as good getting juice from more pulpy, juicy vegetables, like carrots, or peppers or celery.   For that, I have the Breville Juicer (first picture above, to the left).

It's wicked fast, and gets the job done in record time.  So, on most mornings, I get both out. I juice kale, chard and greens through the extruder juicer and everything else through the Breville.

Then I end up with two sets of juice that you see here, which I mix together. I know, it seems crazy, but when I put the greens in the Breville, it doesn't extract the same amount of juice...much less, in fact. So, it's worth the extra work, in my opinion.

After mixing them both together, I pour everyone a glass and down the hatch!!

Now, I'm not going to tell you how awesome it tastes.

Because it doesn't. It's strong, and tangy and sharp and all that. It's vegetables! Let's face it, there's a reason most of us don't each our required amounts.

But here's the payoff: I haven't been sick in over 7 months. Seriously. I can't even remember my last cold. And my family, they actually look at me funny on the few days I don't make juice in the morning.

We are on our 2nd round of family colds in the house so far this season. Dave has one, Kiki has one, and I suspect Cam is fighting one. Mind you, everyone is still at work and school--so they aren't that sick. But they do have sniffles and runny noses.

And me and B, we are symptom free as of this writing :)

So there! If you are thinking about jumping into juicing to improve your health this winter, I say "Go For It!!"


Wednesday, October 10, 2012

Why Chelation? Because it works :)

I remember several months back, I came across a blog post about Frequent Low Dose Chelation.

It was from a recovery blog, one of the many hundreds out there that I've read. I can't find it, now that I want to link to it, but I remember  her quote clear as day:

"Just try it. You don't have to believe in it for it to work. So go ahead, remain skeptical...just DO it!"

I think that was the push I needed to get off the sidelines and try it. I've tried almost everything else, so why not?

Well, here's the update that I'm happy to write for you. Cam is doing great!

His teachers are loving this school year so far. He's almost completely independent at lunchtime. He follows his classmates through the lunch line, gets what he wants (and even what he knows he won't eat, but follows the rules, and puts that stuff on his plate anyway), sits down and eats. The only "intervention" he has had for the past two weeks is a set of adult eyes on him to make sure he's not doing anything he shouldn't. He's a part of things. It's the same story when it comes to snack time and playtime. Even P.E.! He's a bona fide part of his class group during these times. I can't stress how huge an accomplishment this is.

Also, he's learning and reading and sharing with his teachers. Mrs. Van is his Special Ed Teacher and she adores him. She's been struggling to figure out where Cam is with his learning because there is so much in Cam's head that he just doesn't show us because there is no good reason to, as far as Cam sees. But today, she pulls me aside to tell me about how Cam and she are communicating and playing during his breakout learning time. Yes, back and forth, co-regulated play. He's also talking so much more during his day. He continues to be that Happy Cameron that he's always been. But he's more engaged, connected and connecting more to those around him.  

Progress is being made. 

All good stuff.

I've been waiting for this sort of breakthrough for Cam for years. And the only thing that has changed from this year to last is chelation.

Now, I'm not going to discount maturing. There's a lot to be said for growing a whole year older and I know this. But I also know, "in my water" as my Granny used to say, that it's primarily because of the chelation.

After all, Cam has had every intervention that the mainstream educators and therapists have advocated. He had Early Intervention beginning at 8 months of age, with Physical Therapy, Speech Therapy and Occupational Therapy. He had therapeutic playgroups starting at the age of two. Before he turned three,  he began over 35 hours a week of intensive one on one ABA therapy, structured and monitored by some of the most thoughtful and talented behavioral specialists I've ever met. He's had RDI therapy and, let's get real here...I've been reading and learning about autism for the past almost 9 years. The biggest gains we've ever seen with Cam have been directly attributable to biomed therapies and even then, I haven't seen the gains with other therapies as I have with chelation.

Now then, having said all that---is Cam still autistic? Yes. I think he will always be autistic to some degree. My goal, as a mom, is to get him to the place where he can co-regulate and function in society to the best of his ability. I want him to enjoy the give-and-take of friendship, as well as be able to hold a fulfilling job--to have a career.

I know my goals are not small. Quite frankly, I think my goals are just about the same that any parent has for their child.

And for the first time, I'm beginning to really see that they may be realistic.

So, if you've found my blog and you have a child with autism, don't let yourself give up. Give it a try.

Go ahead...keep your skepticism. But try biomedical interventions. Because they work. And the only proof you'll need then will be your child. 

Monday, August 27, 2012

Unicorns and Frequent Low Dose Chelation

So, my family and I met a boy named Zach the other week. He's the son of a colleague of my husband at work. He's 14 years old...and as I mentioned in a previous post, Zach used to have autism.

He doesn't anymore.

Really. He officially lost his diagnosis two years ago. That makes him a Unicorn.

A "Unicorn" in the autism world is probably just what you imagine it to be, even if you've never heard the term before. It's used to describe a child, or teenager, who used to have a confirmed diagnosis of autism (by a psychiatrist or developmental pediatrician) and who has since lost that diagnosis and does not fulfill the DSM-IV criteria of autism spectrum disorder any longer.

I don't know who came up with it, but I wouldn't be surprised to learn that the term was coined by a doctor or some other government official as a snarky way to describe that mythical beast that they do not believe exists--the bio-medically recovered autistic child. After all, autism is thought to be a genetic disorder...right?

But these children do exist. And although I'm sure that use of the term Unicorn was supposed to be a condescending put-down, I think it's a great name to describe something so wondrous and hopeful. 

I've heard about these kids, these Unicorns, for years, ever since I started reading all those autism books when Kiki was 18 months old. But I've only actually met two of them, face to face, at least that I've known about.

One was the son of our DAN doctor back in Philadelphia, and the other is Zach.  Both are boys who had  confirmed autism diagnoses from more than one Developmental Pediatrician, before they were 3. Both are boys whose parents jumped into biomedical intervention for their sons' autism and believe, completely and with no hesitation, that biomedical intervention changed the course of each of their boy's lives. They know this to be true; it is not a theory to them. They do not go around trying to convince others of this truth; but if you ask them, they will tell you. They believe that autism is treatable, curable even, and they have their own sons as living proof.

When I met Zach, on a weekend in May, he and his friends had just finished losing a volleyball game in a local tournament. He was actually thrilled that he could now enjoy the rest of his afternoon and evening, checking out girls and goofing around with his friends instead of playing volleyball.  He was cute, and funny and self-deprecating and just about the coolest 14 year old I'd ever met. According to Jeff, his dad, when Zach was 7, he was such a flight risk and behavioral handful at his special ed classroom in school that they not one, but two aids with him at all times. 

When I met Conner, my other Unicorn encounter, he was with his dad at the HBoT center we were using back in PA. Conner was 10. He also seemed completely charming in his utter normal-ness. His father is Dr. Pat Elliot, our DAN doctor at the time.  Conner was annoyed that his dad had to stop by the center to see us on his way to taking him to his baseball game, but not so annoyed that he was rude. A normal 10 year old. But, as Dr. Elliott tells it, when Connor was 3, he was mostly nonverbal but for scripting tv, liked to bang his head against the wall or floor and run around with his arms stiffly straight out.

I didn't go looking for these two boys. Well, not really. But I did find them, because I'm always on the lookout for therapies and ways to help my boys' autism. As I have come across therapies and met people who I thought would help my boys, I've met Moms and Dads like Zach's and Dr. Elliott. 

I didn't always believe that biomedical intervention would work. For a long time, I just assumed that my boys were who they were, that their autism was just a part of them. And while I still do believe this to some degree, I believe there is much that we can do biologically to change the symptoms of autism and thus change the minds of these often quirky, sometimes peculiar, and always different children.  

I've taken the boys to see Naturopathic Doctors and DAN Doctors, nutritionists and occupational therapists, Homeopathic doctors and developmental pediatricians, psychologists and even one or two doctors that I strongly suspect were selling their own brand of snake oil.  I've always walked into to every meeting with hope, and a healthy dose of skepticism.  Some of those appointments I walked out of thinking "Wow! I'm excited!" and some of them I've walked out of thinking, "Wow. What a load of bullshit!"

Nowadays, we are doing frequent low-dose chelation.   I have heard of chelation for years now.  While I admit that it has always intrigued me, I will also admit that it scared me. But slowly, as my boys bodies began to heal, as they became stronger and less sickly, as they began to eat better and more nutritious foods...well, I began to think that maybe I it was worth trying.

When I meet kids like Zach and Conner--kids who both have been through multiple rounds of chelation and are now no longer autistic--I think I owe it to my kids to try it. 

So, after lots of research on my part, and a little pushing from some parents I know, we've jumped in. We are on Round 7. I'm not going to tell you that it's been miraculous, because it hasn't. But I do see differences in Cam's behavior, in his language and most importantly, in his ability to attend to all that is going on around him. 
A wild ride!
 My hubby and kids on the Orange Crush Coaster at Nickelodeon Universe.

I'm going to do everything I can, and give it my best shot to give each of my children a chance at their best life possible. And I don't think I'm that different from any other loving parent that way.

Sunday, July 22, 2012

Our Story, or How I Came To BioMed Part 3 - Kiki Gets a Diagnosis

In January of 2005, I made my first visit to A.I.Dupont Children's Hospital. After spending all morning meeting with the neurosurgeon for Cameron, I took advantage of simply being in the hospital and went to find the Developmental Pediatric Department. 

Kiki and Daddy, during our visit to Florida in Feb of 2005
age 2 1/2 years
I had been trying, with no success, to get an appointment booked for Kieran to see a Developmental Pediatrician. I had called no fewer than 10 different times (multiple numbers each time) over the course of the previous month and had yet to even talk to a person within the Developmental Pediatrics Department. I had left messages each time, and had received no response to any of them. But on this day, I wasn't going to leave the hospital without an appointment scheduled...even if it was 18 months out.

No, that was not a typo or an exaggeration.

The reason I was trying A.I.Dupont Hospital, instead of the more famous and prestigious Children's Hospital of Philadelphia is because CHoP had an 12 month waiting list before they would even schedule an appointment to see a Developmental Pediatrician. 

I was able to talk to a person when I called CHoP, but they weren't scheduling appointments. I would have had to get on a waiting list and the estimated time that we would see a Dev. Ped. was 18 months. This seemed beyond ludicrous to me, my son was 2 1/2 years old. I needed an official diagnosis as soon as possible, not when he turned 4!  But that's what Developmental Pediatricians were dealing with in early 2005--that's what happens when you have literally tens of thousands of children develop abnormally all of sudden
Cam and his Big Melon. @ 9 months,
just learning to sit up by himself.

So, there I was wandering about the hospital after spending all morning meeting with Cam's neurosurgeon, towing Cam around in his infant carrier in a wagon. I wanted to see the scheduling secretary for Developmental Pediatrics and I wasn't leaving without seeing him or her.

It took me a while to find the right area, because it was tucked way in the back of the hospital...after all this is not a place that patients ever visit. There were some changes afoot within the department (no department chair), or at least, that was the reason I was given for the administrative chaos and complete lack of response to any of my phone calls. I'm not quite sure why having a Department Chair would have made answering the phone or returning a phone message any easier for the administrative assistant, but I let that go at that point. 

I sat and patiently filled out the 6 double-sided pages of paperwork that needed to be completed (questions like how he had developed up to that point, did he have expressive language, how many and what words, etc). About an hour later, I walked out of Dupont  with an appointment for Kieran to see Dr. Anne Meduri within 4 months, in May of 2005. 

At this point in time, Kiki had begun to talk a little bit. He spoke his first words when was about 27 months old. By "talk", I mean that he began to identify things verbally: labeling things. He didn't speak to communicate his thoughts or to ask for things for almost another 6 months. 
One of his favorite activities was having a number book read to him. It was one of those preschool numbers board books, with the Arabic numeral next to a box a corresponding number of objects. Kiki would hold the adult reader's finger over the number that he wanted to be read and move it like mouse on a computer screen. He could literally do this for hours, but I usually only indulged him for about 5 to 10 minutes at a time.  The very first words I ever heard Kiki speak were numbers, quietly counting from one to ten, while he was pointing to the corresponding number in that book.  

He was receiving Early Intervention services through our county's Department of Public Welfare, and he was getting about 3 hours a week: two days of Special Instruction for an hour a time, and one hour a week of Speech Therapy. This extremely limited amount of therapy seems paltry to me now, but that's what we were offered.  I somewhat naively assumed that the county knew what they were doing with treatment. They wouldn't offer it at all if it didn't work, right?

Each of these professionals would come in, engage and play with Kieran, with me present if possible, for an hour each time. They were in agreement that autism seemed to be the logical diagnosis. But he continued to baffle them with his rapid ability to learn things, and his eager desire to please them while playing with him. He would easily attach to each new therapist (we went through several), and loved having these interesting adults coming into the the house, each with a different set of toys and books.

After a few months, it had become apparent that it was autism we were dealing with, even if I couldn't find any other children with a pathological progression like Kiki's.  I began my research in earnest.

I read and learned and educated myself on all sorts of therapies and developmental theory. I read literally everything I could find about autism, in books and on the internet. I belonged to lots of different parent support groups and had talked to lots of parents about their particular autism journey. The more experienced and  knowledgeable moms I met were talking about ABA Therapy and lots of it--40 hours a week! One mother was just about to go to Due Process with her son's school district over the proposed IEP, which she was refusing to sign. She wanted 40 hours of 1:1 ABA Therapy and the district was not offering anything close to that. She was clearly a woman on a mission, but I really had no clue what she was even talking about. Her world of acronyms and experience seemed so different from mine.

The most confusing point for me was how different Kieran's autism seemed compared to most other cases I had read about or heard about. None of the Moms I met had a child like mine. Their kids had regressed after first learning to talk, or their kids couldn't focus at all, and couldn't seem to learn at all. While my Kiki seemed so smart. He never regressed, although how he was learning to talk seems completely ass-backwards to me, when you look at it from a developmental standpoint. In fact, it now seems amazing that Kiki learned to talk at all.

Because my boys did not experience any regression, I never really listened to those who talked about Biomedical treatment of autism. I think I just thought that my boys autism was genetic, or was due to some unknown developmental "glitch". I thought that they might "grow out of it" with the right therapy, or at least get better to the point where they would be able learn. One of our therapists would talk about how some children with an autism diagnosis would lose that diagnosis before they turned 5, but she didn't know how or why this happened. And she hadn't personally met of these children herself.

But I continued to believe and hope for the best for my boys.   After all...everyone has a cousin or nephew or some sister's, cousin's best friend's kid "that didn't talk until they were 3 or so, but seems just fine now."

In a one on one setting, Kiki was fabulous. Not neurotypical, by any means, but he could and would engage with just about anyone. But when I put him in a community setting, especially with any other children around, he would completely check out---I now realize, because he was so overwhelmed. He would stim or fixate on a toy, or just run around and make noise. 

I tried infant/toddler storytime at the local library for a couple of weeks, and I thought the musty old librarian was going to kill us or commit hari kari. She would roll her eyes and tisk at Kiki's running around the back of the room, or up and down the aisles of books. She clearly had labeled me one of those indulgent, permissive parents, afraid to tell her child no. She made it really clear that we weren't wanted or welcome there, so we stopped that.

Since that didn't work, I tried to find a preschool that would help him to be around his typically developing peers in a more organized setting--somewhere he would be supported and where he could learn.

We were kicked out of the first program I enrolled him in, one for 2 year olds, and on the very first day of class, joke! Apparently, they didn't like it when Kieran screamed when they took all those lovely new toys out of his hands and made him sit for circle time.   Of course, in retrospect, I was way too honest about his problems. Here I thought I was helping the school to support Kieran when I was really giving them an excuse to not have to deal with him to begin with...he was just "too difficult" and required "too much support."  

In retrospect, this still pisses me off when I think about it. I could completely understand if Kiki had acted this way for more than two weeks of class. But only after the first day they make this judgement call...? 

Our front office had a chalkboard wall,
that we make good use of during our day.
Kiki continued to make good progress with his in-home therapy visits. Our house looked almost completely like a preschool. We had no furniture in the formal living and dining room, so those were our "therapy rooms."  I had a small table and chairs and lots of different toys, blocks and books. He clearly understood the routine when his therapists came to visit and play with him in those rooms. And he was learning incredibly fast. 

Over the course of a two week period in December, Kieran managed to teach himself the entire alphabet. For his birthday, he received that Leapfrog toy where you put one of the 26 letter pieces into this little barn and the toy would sing a song about that letter. "A says aaa, and A says ay, every letter makes a sound..." He played with this toy hanging on the fridge for literally hours at a time. I limited the total number of letters out at any one time to 5, and I  rotated them, so as not to overwhelm him (and also so we wouldn't lose them). After about two weeks, I realized that Kiki was identifying and reading letters everywhere.

In another attempt to get us out of the house and out into the world, I tried a sensory play-group for kids with developmental delays that was offered by Early Intervention once a week. Parents would sit with their child for 10 minutes of circle time and then we were asked to wait in another room down the hall while the 5 teachers, a group of speech, occupational and physical therapists, would run the playgroup for the next 90 minutes or so. After 8 weeks, they told me that they didn't want Kiki back for the next session. He needed to "mature" and perhaps give him time "to learn how to talk and identify things."

This really baffled me, because Kiki did talk. At this point, he could actually read about 50 words. But I realized that once he walked into that room full of 8 other children, he became so overwhelmed and overstimulated, he couldn't do anything, couldn't focus on anything.  

This was yet another example of me trusting in a system with professionals that really had no idea what they were doing. Here was a group of developmental professionals that clearly hadn't even read Kiki's file that had been compiled and sent over from his home therapists!  This was yet another playgroup we were essentially kicked out of, and this one was supposedly developed for kids just like Kiki! That was a particularly low and frustrating time for me. That's probably when I really began to understand that the professionals running the education system didn't automatically deserve my trust and respect. They didn't understand autism any more than I did, even though they has supposedly gone to school and studied it!

So in May of 2005, when Kiki was approaching his 3rd birthday, we finally went in to meet Dr. Anne Meduri at A.I. Dupont. Dave had come to the appointment with me, and we both decided that we liked her very much. She was patient and thoughtful, thorough and empathetic. She didn't profess knowledge that she didn't have and she was very up front in admitting that she didn't understand autism, although she was seeing it and diagnosing it on a daily basis. She didn't know why some children learned to speak and others didn't. She didn't know why some kids stimmed all the time, never stopping even as adults, and others seemed to stop around puberty.

She ran a battery of developmental tests and asked me a ton of questions. She did a vocabulary test and found, at just under the age of 3, he had parts of the vocabulary of a 6 year old. He had a particular interest in animals and nature, which were the questions he kept getting correct just often enough to continue the test long beyond when I thought it was productive.  He would get confused when she would ask him to do some activities, but he remained engaged through most of the hour and a half appointment. 

She diagnosed him with High Functioning Autism, because he clearly was bright and had a good ability to learn. She agreed with me that he needed to learn how to regulate himself in a group setting. She and I talked about the upcoming transition of services for Kieran when he turned 3, and moved into the realm of the School District.  She wanted us to bring him back the following year, so we could see how he was progressing. And perhaps most importantly, she also gave me her office phone number and email and said I could contact her with any questions or concerns. And two hours later, we walked out of A.I.Dupont and went home. 

A lot of parents report feeling despair the day they receive that official autism diagnosis, but it was really just another day to me. I knew of Kiki's autism almost a year before we sat down with Dr. Meduri. The one thing we walked out of that appointment with was that written diagnosis, which would qualify Kieran for Medical Assistance and hopefully more help. But really, that was it. We didn't leave with any medical directive, or any offers for research opportunities, although I made it clear that I would be willing to participate in any research Dr. Meduri was doing or knew of--which was none. I got the sense that she was busy enough with simply the day to day running of things at DuPont. 

We left DuPont Children's Hospital knowing exactly what we knew when we walked in two hours before. Kiki had autism, and no one knew why. 

Friday, July 06, 2012

How I came to biomedical intervention for autism, part 2

My youngest, Cam, came into this world on a hot summer day in 2004, much to the relief of both myself and Dave. It was to me, because being 9 months pregnant in the middle of August sucks. Let me clear about that. And to Dave because I think he was just so thrilled to not have to listen to me bitch and moan about being so pregnant anymore.
Cam's Birthday Day. Even Stinky Bear got to come visit the New Baby! This is the first picture of all 5 of Us.

My pregnancy with Cam was mostly uneventful. Well... we did move from the Midwest to the East Coast when I was 6 months along. I did have two other children: my very busy 3 year old daughter, and my son, Kiki, who was approaching his 2nd birthday.

I was very, very concerned about Kiki because he was beginning to display classic signs of autism. He was still completely nonverbal and he had recently begun to stim, by running around the island in our kitchen (always to the left) and lining up his toys on the back of the couch.

My daughter, Blythe, was not technically a "late talker." However, at her 20 month checkup,  I remember having a conversation with her pediatrician about the fact that she only had about 10 words. Yes, the doctor did think that she was at the slower end of normal. But at the end of the visit, he looked at me and smiled and said, "While she doesn't say an awful lot, she obviously understands you and she is so very busy exploring her world and sharing it with you, that I'm confident she will catch up with her language very soon." And she did.

But Kiki didn't understand me at 20 months. He seemed off in his own little world most of the time. At 18 months, Kiki was tested by Early Intervention, and he showed the verbal and social development equivalent of a 9 month old, but the cognitive development of a 16 month old. So, we had begun with speech therapy once a week and developmental therapy 3 times a week, all at home. Each for one hour at a time. In retrospect, this seems ridiculous--not even close to enough intervention to make a real difference.  But to everyone's credit, this is 2004 and the Autism Epidemic was really only just beginning. Nobody really knew what we were dealing with here.

So, that August, when Cam came into the world, we had a busy family. 

But, there was one thing that did happen during my pregnancy with Cam. I experienced some spotting, bleeding during my 21 week, just over halfway into Cam's gestation. It was nothing big, just some bright red spots on my underwear one day after a long walk around the city of Chicago with friends. It wasn't that big a deal (I had had something similar when I was pregnant with Blythe, only at 13 weeks--likely implantation bleeding then), but I did call my doctor and she sent me over to the hospital for a looky-see. They hooked me up to a contraction monitor for an hour or so and listened for a heartbeat on the handheld doppler machine for a bit. It was nice and strong. One thing they did do, though, we give me an extra RhoGam shot

Now, I'm rh negative. There's a broader discription of what that means here or here if you are interested. But the long and short of it is this,  during each of my pregnancies, I received two RhoGam shots: one at around 28 weeks and another post natally.  I've also had three extra RhoGam shots, one during my first pregnancy with my daughter, at 13 weeks (because of spotting), after a miscarriage between the births of Kieran and Cameron, and during Cam's pregnancy after the aforementioned ER visit because of spotting in the 22 week. 

Nowadays, I think most of the RhoGam shots are thimerosal free, but there is also some controversy in the medical world about whether or not we need the prenatal dose of RhoGam.  But before 2002, they all contained thimerosal, which is 50% ethyl-mercury, and which should be considered a bolus dose of mercury (25mcg per shot). Also, the older, thimerosal-containing supply was phased out, not taken off the shelves and thrown away. So, in 2003 or 2004, if you gave birth (like I did), you could have very easily gotten the thimerosal-containing product. 

This was injected directly into my blood while I was pregnant, and I had an extra dose while I was pregnant each with Blythe and Cam, because of the spotting. If you are doing the math, that's a full nine injections of RhoGam that I had between the years of 2000 and 2004. Yeah....*sigh*   

I didn't even think about all this until several years later, after it was evident that I was dealing with not one, but two autistic children. And one who seemed much more severely autistic than the other. And, please don't misunderstand me in thinking that I am totally against medicine or Rhogam or hospital birth. I'm not. But I do think that sometimes the medical establishment doesn't want to think that something they may have done to a patient could cause harm to that patient without their knowledge or understanding. They could be---gasp---wrong in their beliefs. There could be more for us to learn about the human body, especially the development of the human brain. 

Cam within minutes after birth. The bluish hands=APGAR of 9,
 but almost all babies born vaginally will have blue hands for several minutes.
So...back to Cam's birthday. It was fairly uneventful. He had an APGAR score of 9, notice those little bluish hands. But he was very healthy, latched on right away. He was 9lbs, and 4oz of love!

We took him home and he did fine. Cam slept okay. He wasn't the Sleeping Heavyweight Champ that Kieran was, but he nursed and slept and we rocked along well. He had all his shots on schedule, which included the somewhat controversial birth dose of Hib. Again, I trusted my medical doctors and nurses to do no harm. I did not know that this birth dose was not something that Blythe had when she was born, 3 years previously. Interestingly enough, Kiki did have it.

Things got interesting at Cam's 4th month doctor's visit. We went in for the usual round of weighing and measuring. This would be a routine "well baby" visit, or so I thought. 

What was weird was how many times his head was measured. I think the first nurse did it twice, and then another nurse came in and did it again while we were waiting for the doctor. And then, when the doctor came in, she measured Cam's head herself. Each time, the measurer commented on my son's big head. This didn't concern me because both Blythe and Kiki had big heads (both in the 95%), and I remember even saying to both nurses and the doctor, "Oh, yes. All my babies have huge heads!" to try to reassure them. 

It wasn't until the doctor showed me the graph that I was startled. The difference between the 50% and 95% in 4 month old babies' heads was 2 centimeters. Cameron's head was a full 2 centimeters above the 95%! He was literally off the chart. By a lot. The doctor then asked me a ton of questions. How was he sleeping? How was he behaving? Did he have any screaming episodes or did he seem in pain at any time during the day? How was his eating? Anything unusual? And I answered as best I could. No, he seemed normal in every way. 

So, she sent me off with a referral to see the neurosurgeon at A.I.Dupont Hospital for Children down in Wilmington, DE.  She wanted to rule out anything "Metabolic" which would cause the abnormally large head growth.  We saw Dr. Jeffrey Campbell, who was very nice and seemed highly competent. I think we were seen by him at Dupont within about a week after Cam's 4th month doctor's visit. We spent almost the whole morning there. 

After Dr. Campbell completed Cam's initial work up, he sent us right down to have a brain ultrasound, which can be done through the top fontenelle in infants. The benefits are that it can "see" quite a lot of the brain, but has much less radiation than a CT scan or an MRI, and there's no need for sedation. 

Dr. Campbell diagnosed Cameron with Benign External Hydrocephalus, excess fluid between the skull and the brain. It should not be confused with Hydrocephalus, which is a completely different diagnosis.  He said that BEH was the most common diagnosis he made and it usually required no treatment beyond close monitoring. He felt confident sending us home with nothing more than a follow up visit scheduled in 2 months. 

No one knows what causes Benign External Hydrocephalus, why it seems to affect more boys than girls, with 2 out of every 3 cases being male, or why it seemingly corrects itself in the vast majority of cases before the child hits 18 months of age, although there is evidence to suggest that a significant number of children with BEH have developmental delays, especially gross motor and speech delays.

Cam, and his big ole head at 9 months.
I was told it was "just one of those things" and not to worry too much about it, until it becomes something to worry about. Again, these doctors seemed really competent, so I trusted them. 

And to be clear, I believe that in most cases doctors are competent. My very best friend in the whole world is an ER physician. Doctors work hard and know a lot. But there is so much left to learn.  I just think that sometimes it's hard to see patterns that may be right in front of you, especially when you don't want to see them, or if they seemingly go against all that you have been taught in medicine up to now. 

So, again, if you are following along with  me, up to this point, I have had two infant boys with head abnormalities that required physician examination, if not physician intervention. Both boys had CT scans. Kiki had his at 7 months, and Cam had his much later, at 16 months old, because he still had a really big head, along with gross motor and speech delays. 

Could there be a connection that both boys have had abnormal heads, both have autism? Could that connection be due to prenatal thimerosal exposure? I don't really know the answer to that. 

I think there is a good chance there is, but I can't prove it. So, it doesn't really matter as far a medical science is concerned.  But I do firmly believe that there are lots more moms out there like me, fighting the fight that I'm fighting. I have seen with my own eyes the numbers of parents with two or more biological children, not twins, with autism rise. More data points, on a data collection sheet that no one seems to be looking at :(

More on how we got our first actual Autism Diagnosis next time. 

Friday, June 29, 2012

How I came to Biomedical Intervention for Autism, part 1

So, I didn't start any biomedical therapies with either of my boys until Kieran was 6 and Cameron was 4. I had flirted with vitamin supplements, but I had no real idea what dosages to use. So, I never really gave the boys what they needed in order to get the ball rolling with biomed. I didn't believe that vaccines hurt my boys, because the stories of each of my boys' first years of life was so different in big ways compared to that narrative we've all heard and read about.

Like a lot of Moms, I had heard a lot about autism and vaccines between 2001-2005, and I had read Facing Autism and Overcoming Autism. These books were well written and interesting, but they didn't describe our experience with autism at all.

Some parents describe kids that were talking, pointing--totally socially normal, and then-BAM-right after their 15 month checkup and shots, they were gone. That was never my experience with either of my boys.

Kiki never really experienced any real regression. He was the happiest, most content baby I had ever seen. He slept like a champ. (6-8 hours at night and several 2+ hour naps during the day). He seemed to develop normally until about 6 to 8 months and then his development stalled out.

As I look back at his first year, there were classic warning signs. But, the description of these children did not fit Kiki at all. He just never started talking, or pointing or interacting with his world in that wonderfully messy, active way that babies do when they reach about 9 months of age.
Kieran at 10 months-he was in the middle
of fighting a reoccurring ear infection that
he had for two months. You can really see his puffy eyes :(

However, he did have his own health issues.

Right after Christmas of 2003, sometime after his 4 month checkup (but not immediately after--like two weeks after), Kiki caught RSV. This sent him, and us, on a spiral of asthma and nebulizer treatments and round-the-clock worry that lasted until he was almost 2 years old.

To say that Kiki was a sickly baby, from that point on, is more than fair. He caught every cold you can imagine. He would wheeze and gasp for breath during the first few days of each cold virus that would come his way. And they seemed to come weekly. Just as one viral infection would wane, another wave of fever and snot would come again. I became exquisitely sensitive to signs of new infections, the onset of new symptoms--this was the only way I could tell when one cold stopped and a new virus was beginning.

The first round of RSV lasted about three weeks. While he was never hospitalized, it was frightening for me. There he was, my tiny, four month old baby boy, fighting for air, his ribs clearly showing with each inhale, as he fought to suck in enough oxygen to sustain himself. He was hungry, but could not catch his breath to properly nurse, so he didn't nurse for several days. I ended up taking an oral medicine syringe, pumping my milk into a little cup and giving him half a teaspoon of milk every two minutes for hours at a time. In addition to not being able to catch his breath, he started vomiting the day after we started nebulizer treatments--one more worry for me.

During those first few months, I read every book I could get my hands on about childhood asthma, the causes, the triggers...everything. I was on  a first name basis with all of the phone nurses at our pediatrician's office.  I would call to check in and pick their brain on what signs to be on the lookout for---signs of recovery, but--more importantly--signs that we needed to head to the ER. I was often praised by the staff there that they wished all their parents of asthma-babies were as driven as I was to take control of their baby's medical care. Keeping his asthma under control, and Kiki out of the hospital, was my number one priority.

We never had to go the ER for Kiki's asthma. I was very proactive and aggressive with his treatment. Albuterol, inhaled cortical-steroids, and even oral steroids--Kiki was on all of them from about 5 months of age, onward. I trusted the medical professionals that they knew what they were doing on that score. In retrospect, though, I can see that his immune system was under siege. I didn't understand what could be the cause at the time, or that there was anything I could do about it.
Kiki with his Paw Paw at 12 months. His head looks bigger,
he seems more alert.  But he also still looks sick to me.

When Kieran was 7 months old, I noticed one morning that he had a bulging fontanelle.  That morning, he was normally behaved,  not running a fever, nor did he have any other symptoms that caused worry. But I did call the doctor and she said to go ahead and bring him in.

After she examined him, she agreed that, yes, Kiki's fontanelle was definitely bulging. But she couldn't really see any reason why. In an abundance of caution, she scheduled him to have a CT scan the following week. No, she didn't come across this often with a healthy child, a child without some form of encephalitis, so I think that's why she was wanting to check it out "just to be sure" that there wasn't anything going on.

In retrospect, Kiki had just had his 6 month series of shots 10 days before. Because he had been so sick that January, February and March, he was a month behind in his shot schedule. Like a good mom, I had given him his full series of shots that visit, which was 4 needle sticks, 7 different vaccines

Now, I don't know for certain that this could have caused swelling in his brain. The CT scan showed that he was fine, that there was nothing abnormal about the structure of his brain. But would it have caught slight swelling? Or more specifically, swelling in specific areas of the brain, not necessarily the whole brain? Was the radiologist only really looking for something "significant" and what would something "significant" look like? A tumor or abscess only?

I don't really know the answers to these questions, because my son was completely, neurologically "normal" at this time. No one was thinking about autism. While he was, and has always been, a very visual learner, he didn't seem "unusual" in this regard. He was only 7 months old. Sure his head was large, above the 95%. But again, not abnormally so.

Only now, as I go back and recount Kiki's health history, does any of this seem possibly relevant--little data points that may, or may not, link with other families stories about their child's first year of life. No one has ever asked me questions about this time in my life. These are things that I have remembered and pieced together, well after the fact. Who really knows if they are relevant. I believe they are, but I can't prove it.

But I digress with my story...

When we moved away from Illinois to Pennsylvania, just before Kiki turned 2, his asthma cleared up almost overnight. He would still get sick more frequently than I would have liked to see--maybe 7-9 viral colds a winter. But never with wheezing again.

Which was a relief, because by that time, autism was on my mental radar screen. Kiki was 18 months with no language at all.  But he did have repetitive motions, running in circles and an insanely long attention span to preferred toys and books. What seemed cute and interesting at 16 months of age, had rapidly become strange and worrisome at 18 to 20 months of age. Reading scores of books on asthma had given way to reading scores of books and articles about autism.

Not long after we moved to PA, just after Kieran celebrated his 2nd birthday, Cameron was born...and during Cam's first year of life, a whole new set issues cropped up--this time for Cameron. There was a pattern emerging, but I wouldn't see it clearly for several more years yet.

More next time...

Thursday, May 24, 2012

What I want for my boys

About a month ago, Dave met a colleague at work who also has a son with autism. This man's son, Zach,  is 14 years old, and just the coolest kid you'd ever want to meet. Sweet. Funny. Normal.

I say that last word with a lot of respect and downright awe.

He has friends.
He can co regulate himself to the point where he has friendships with people who are not related to him.

That's what I mean when I say the word normal, and I long for the ability to have that type of relationship for my boys more than anything in the entire world.

When parents say things like, "I hate autism," or  "I wish my child was normal," I think what they really mean is more like the above statement. They want their kid to be able to make and keep a friend.

It's not that I want my child to be a totally different person. It's not that I want any of that quirkiness to go away. I just want him to be able to understand another's perspective. I want him to be able to fit in and make new friends. Not everyday. Not even every year. Just once. Just one friend. I'd start with that.

To me, that would feel like winning the lottery. Really.

I'll explain more about my new friend, Zach, and how it relates to us tomorrow.

Monday, May 21, 2012

Get Your Guy Some Headphones!!!

Cam has always been very sensitive to sound. I always knew this, so I'm surprised it took me so long to go out and get the boy some noise cancelling headphones, but it did. It took me until he was 7 to do this. So I'm posting this to let you know to go get some now.

Noise Reducing Earmuffs from the hardware store.
I bought this pair at the local Ace Hardware store for about $30, but I bet you could get them slightly cheaper someplace else. They are awesome! Here's why---

Cam doesn't have to wear them all the time. But the magic is that he controls them. If he needs them, he asks for them or runs to get them.  Truth is, after we had had them around for a month or so, he often doesn't need them.  They will sometimes go missing. But they always turn up under a pile of pillows in the playroom or under his bed.

When we went to Disney this Spring, they were a God-Send! He was able to handle those loud and scary places so much better. And they have the added bonus of being almost a sign pointing to him saying "This Child Is Special," which I appreciate. 

I know some parents may have issues with their kid being so obviously labeled as "different" and I understand that. But, if you enjoy being able to help your child achieve autonomy over his or her sensory system, look into Noise Reducing Headphones.  They really are Awesome!!!

Tuesday, May 08, 2012

Who We Are & How Did We Get Here...sort of.

My husband and I have three children: a neurotypical daughter, now age 11 and two boys, both on with Autism, now ages 9 and 7. It's been a wild ride, but I thought it might be interesting to tell our story of how we got to today, which, as I write this, it's a glorious spring day in 2012.

All my pregnancies have been uneventful to the point of complete boringness. I took my vitamins, probably ate a little too much for my own good, avoided alcohol and any recreational drugs, slept a lot for the 1st pregnancy--and, not so well for the 2nd and 3rd, but who does with multiple children?--and went into labor on or very close to the 38 week mark for each of them. My first child, my daughter, Blythe, was born on a stormy February night.

Finding my "Mommy Legs" was hard, but I thought I did okay for the first year. I struggled mightily with getting Blythie to sleep, but I obviously thought I knew what I was doing on some level because when she was 9 months old, I became pregnant with my older son, Kieran.

I guess I've always known that Kieran was wired differently, since he was born. He developed normally through most of his first year, but he was always studying things. I used to say that Kieran would visually "eat" stuff. He would look intently at books for hours, and he liked to watch tv, but only cleanly designed things; like the Baby Einstein videos or Tellytubbies (NOT the live action parts with the live children, though--he would look away or start to act bored with that stuff).

I began to sense that something was up with him when he was about a year old, and he wasn't interested in talking at all. No words. But he would perform what I jokingly called his "science experiments": watching how balls would bounce around the floor, or down the stairs, or how cars would roll. It wasn't what I thought of as "normal" toddler play, but it wasn't mindless, either. He was clearly trying to figure out how these things worked. When I would ask our Pediatrician though, I got the stock answer: "Boys are slower to develop than girls. Don't worry."  (Thank God they don't say that anymore, right? At least, I hope they don't!)

He also had a freakishly long attention span for a toddler. I can remember him playing with one of those tracking bead mazes for 45 minutes one day while we were visiting a library. Forty Five minutes! I know, I timed it--I was so perplexed. And he would have gladly stayed even longer, but we had to leave, so I dragged him, crying out of the library and away from the fascinating toy.

I finally began to truly understand something was up, though, when we went to our first Gymboree class when he was almost 14 months old. He had zero interest in the other kids. While the other children were climbing all over each other, knocking each other over and rolling balls to each other
(all without that much language, mind you) Kieran just slowly crawled about the room, completely oblivious to everyone except me.

That's when I started pushing for him to be formally assessed for delays, and when he was finally evaluated at 18 months, he tested with language at 9 months. His cognitive skills were fine, though. Above average, even, according to the Developmental Therapist who tested him. Thus began our saga to find out what was going on with Kieran. No one wanted to say he was autistic, when it was obvious that he was really quite smart and good at figuring all kinds of things out. It's only been in the past few years that research has shown just how intelligent most children with autism are, and it's not viewed as the exception to have a bright autistic child anymore.

He learned the entire alphabet in a little over two weeks, when he was about 2 1/2. And he had taught himself how to read well over 50 words by the time he was 3, but he couldn't have a conversation with anyone.

We finally got him in to see a Developmental Pediatrician when he was 3 years old (which was a saga in an of itself) and only then he did receive his formal diagnosis of Autism Spectrum Disorder.

Not long after that, I stumbled across RDI on a parent blog. Curious, I wanted to find out more, and I went to the 2-Day Introductory Seminar given by Dr. Gutstein, and finally found someone who could explain to me how and why a child who is so bright have such a hard time learning language or making friends. In fact, I vividly remember Dr. Gutstein announcing to the group that, if we only walked away with one thing from the 2-Day course, it was that we would walk away with a new understanding of what Autism is and what it isn't. I was like, "Yeah, Dude. I've read so many damn books and articles. Go for it! Teach me something I don't know."

And, well, he did and I walked away from that seminar finally understanding my son in a way that I hadn't until then and it deeply influences the way I understand and communicate autism now.  I highly recommend his books and seminars to everyone I meet in the autism world. 

We never did a formal ABA therapy plan for Kiki, but he has been in Verbal Behavior classrooms ever since he turned 3. He just finished 1st Grade in our public school district. He has a one on one aid with him the whole day, even at lunch. But he is doing grade level work, and slowly learning how to be a part of a class.

By the time we realized something was up with Kieran's development, I was pregnant with Cameron. Now, Cameron's autism in many ways seems very similar to Kieran's, but also very different. Cameron is much less verbal, but he understands what is going on around him and what is being said. Cameron loves to be around other children, and he plays with them in very basic chase games. But he does seem more affected by autism than his brother in some ways (intellectual ways) but less affected in others. You wouldn't necessarily know that Cameron has autism when you first meet him. He's not a flapper and he can follow along with a conversation going on around him. But, as he's getting older, he is falling farther and farther behind his typical peers.

And then there's Blythe, who not only had to tolerate a brother come into her perfect Blythe-centered world when she was 18months old and steal all the attention (an event which she still holds against me, to this day), but she has also tolerated therapists coming into the house several times a week to have "therapy time" which no doubt looked exactly like "play time" to her. And because she's such a dynamic force to all those around her, she had to stay away from these therapy sessions, or else they would become all about her, and not learning opportunities for Kiki or Cam.

She's watched other kids actively play with their own siblings, while hers seem to not even know she's there sometimes. And then there's the responsibility I know she feels for them: the times she's watched them for me while I shower, and stopped them from doing something dangerous or escape out the front door. I remember vividly the day when she was 4 years old and she asked me why she couldn't have normal brothers to play with, and then she broke my heart even more when she asked if it was her fault Kiki and Cam were autistic.  *big, heartfelt sigh*  I felt about 2 inches tall on that day, let me tell you.

So, that's sort of a rambling of how who we are and how I came to realize that we weren't all typically developing in our house. 

My Rant

Parenting children is hard.

This is a universally acknowledged truth.

Most people know this because they either have children, or because they know someone close to them with children. They can see just how hard it is when they visit them, or spend any amount of time with them.

Parenting children with autism is exponentially harder.

This is not necessarily news. I think most people, as especially those with children, can imagine this. 

But what is perhaps not known is just how much harder it is and how the autism manifests itself into real, everyday life.

It's like having to bring your "A" game, your absolute best every single day. If you have an "off" day, like say---maybe you just don't feel up to figuring out every detail, 8 hours ahead of time, with more than one backup plan in place, and you just want to coast a little one day, you will pay for it. 

There will be meltdowns, and tantrums, or worse...your child will figure out a way to escape out of the house and you won't realize he's gone until it's too late. (no, that last one hasn't happened to me, but it's a fear I have)

But, I'm not going to sit here and go on and on about just how hard it is. What I am going to tell you is that, until you have had the experience of parenting a child with autismyou will never know how hard it is. Like most things in life, you can imagine all you want...and perhaps you will gain new perspective from that. But the true, major learning lessons in life have to be experienced to be understood.

And what really sucks from my perspective about having two children with autism is this: dealing with people who not only think they know all about what it would be like having a child (or two) with autism, and they treat you as though you are doing it all wrong, and that they could do it better.

I know this, because I experience it whenever my In-Laws come for a visit.

And I'm done with it.

I'm done with the constant sniping little digs about how I'm "coddling the boys", I'm not "allowing them to deal with the consequences" of their actions.

The only person who really suffers from "dealing with consequences" is me. I have to pick up the pieces when one of the boys gets worked up.  I walk a fine line between pushing them harder and pulling back. Because I've pushed to hard in the past many, many times, and had to suffer those consequences all by my self. 

Autistic children do not learn things the same way that typical children do. If they did, they wouldn't be autistic, now, would they? 

It seems rather obvious, doesn't it.

Why is this so fucking hard for people to understand. Oh, because they haven't experienced it yet, you say? Oh how true.

But that doesn't stop their judgement, or glaring looks, or sighs, no matter how subtle or quiet they think they are being. I can still hear it. Really. 

When it comes to figuring out what people are not saying, I am a Jedi Fucking Master. 

And you know what, maybe I am making mistakes and doing it all wrong. Maybe I suck at this. But I'm doing the absolute best I can. Really. So why don't you get up off your judgemental ass and dig in and help me out. I mean real, get-your-hands-dirty-help me out before you let yourself think another negative thought about how I am functioning as a parent. 

If nothing else, you might just learn something.