Back Into the Fire

It happened again. I got into a debate with an anti-vaxxer. Sigh. When will it end?

It happened on Facebook, of course. I rarely even read the forums anymore, let alone post on them. A friend had posted something about the Swine Flu, which evolved into a massive thread about vaccinations, and vaccine-induce autism was mentioned in passing. Oh hell, talk about a button being pushed. The culprit was a woman who said, "Tell that to the parents who have watched their children become autistic after recieving thimerosal containing vaccines ... including my nephew, who was perfectly normal before recieving the MMR at age 2, then spiked a 106 fever, had a seizure, got a blank look in his eyes, lost all his language and has never ever been normal since. :-( " What the hell.


I politely corrected her on one count, letting her know that the MMR does not now, nor did it ever contain thimerosal. So then she says, "Actually ... I was just reading up on the MMR/Autism debate today, and now they're thinking it's not thimerosal that's the culprit but the actual Measle's virus used infecting the brainstem. Point is, they don't really know what causes the autism MMR connection, I just cannot refute the evidence of my own eyes. " What?!
And who are "They" anyway? They don't really know. My point exactly, but without the MMR connection. She goes on to proudly state that she stopped vaccinating her own children after reading the list of vaccine ingredients and claims that those who do vaccinate their kids display a "religious fervor" with their faith in vaccines preventing illness. Huh. Religious fervor, eh? Take a look in the mirror, sister. Vaccines aren't the big bad boogeyman here.


To say I got a little worked up is an understatement. Ridiculous misinformation is being passed along via Jenny McCarthy and her crew and it shows no signs of stopping. I politely posted a link to the Fombonne study, a fave of mine, and let it go.


I really wish that people such as the woman I quoted would stop for a moment and think about what they are preaching before they pass it along. Obviously, she has taken bits and pieces of misinformation along the way and sewn them all together to make a cozy quilt of blame. She doesn't really know what she is talking about, and that was apparent from the start. So why on earth do I let myself get sucked into this kind of crap?


I don't care why my son is autistic. I got past that long ago, and accepted that he is how he is regardless of reason. He is a wonderful kid with a lot to offer, and I refuse to accept that some people will continue to think of autistic kids as toxic, vaccine-damaged, train-wrecked shells of what they once were or should have been. Bullshit.


The woman seems nice enough. She cares for her children, I am certain, just as I care for my own. She is doing what she thinks is right and safe for them, just like me. However, I got the feeling that she doesn't harbor the same goodwill feelings toward the likes of me. Her comments were heavily laced with "I don't vaccinate my children because I love them and anyone who does vaccinate does not have their child's best interest at heart" type of innuendo. She got pretty defensive when a different commenter stated, "Yeah I think it's great you're letting your children be a breeding ground for new viruses. The world thanks you."


At any rate, I hope that she will at least think twice before she drops the "vaccines cause autism" shit bomb again. But I kind of doubt it. Religious fervor, indeed.

Training wheels just aren't cool anymore

Bike riding seems so basic to us, we tend to forget how tough it can be to learn. The old "It's like riding a bicycle" is applied to tasks that are like second nature by now.

Not so simple for a kid like Eli. This will be our third summer for trying to help him learn with no training wheels. Last summer, he finally mastered braking with coaster brakes, only to completely forget that skill over the winter. Our first couple of trips around the block this spring were nerve-wracking for me to watch. I need to constantly remind him to pedal backward rather than just dragging a foot to slow and stop.

Our street is fairly quiet, and there is a parking lot for a church at the end of the block to practice, but Eli doesn't want to practice at all. He wants to master tasks instantly or he has a tendency to just give up. Last night, I overheard him and Jim playing in the backyard and Jim kept trying to teach Eli how to throw a ball overhand for the dogs to fetch. Eli didn't get it right away and got mad, stomping off. So we have our work cut out for us.

I got a great first bike for him at a yard sale a few years ago, and envisioned nice family bike rides like I see here in the neighborhood. Didn't happen. I spend so much energy just trying to make sure he doesn't go flying uncontrolled into the street that I can't enjoy it myself. It is frustrating, to say the least, and disappointing for my older daughter who rides like the wind at the age of 11.

I mentioned this to the social worker at school a couple of weeks ago and said I had heard of a bike riding clinic for kids like Eli. She had heard of it, too, but didn't have the information at hand and promised to look into it. Yesterday I went through Eli's backpack after school as usual and there was a sheet from her with TONS of resources for summer activities and the bike riding clinic.

Bike riding means freedom to kids. It's fast. It's fun. It's what most other kids do to get from A to B in the neighborhood. And most importantly for a kid like mine, it's achievement. So we are definitely going to sign him up for this and follow through. It's a 45 minute drive from where we are, but well worth the trip!

Here is what I found, and I hope someone else benefits from this information. The program is called Lose The Training Wheels and I hope we do.

Labels and snap decisions

I don't want to make the mistake of sounding like everything is all rainbows and unicorns all the time here at the Mothership. We have scuffles and bumps in the road like any family and with girls (including one teenager and one who wishes she was a teenager) there is somtimes even HIGH DRAMA. I try to keep my head at these trying times, sometimes even succeeding!

Eventually, we get around obstacles or over, or through them; whatever it takes. When Eli was 3, he had sleep problems. That's an understatement though, really. This kid would maybe sleep 3 or 4 hours a night and that was a good night. I checked out options and tried melatonin for him before trying meds, as his doc was leery of the effects of antypsychotics on a child so young. No duh. The melatonin worked great for a little over three years, then abruptly stopped working. I removed it completely, waited two weeks and then reintroduced it -- nothing. Over summertime it wasn't the end of the world but when school resumed it became an issue pretty quickly.

I talked to his doc about Clonidine (not an antipsychotic) and we gave it a shot. I had already talked to other autism moms I know and some of their kids took it with good results. Eureka! Sleep, blessed sleep. Eli functioned better at school and was able to cope better throughout the day, and he was actually able to learn and retain information better with a decent night's sleep. We have adjusted the dosage a couple of times now but I am of the school of "If it ain't broke, don't fix it" so we try to not mess with too many variables.

Fast forward to the IEP meeting last week. One of the members of Eli's team broached the subject of ADD and meds to treat it. You know the routine -- they gently suggest it and you just know that secretly, the staff is all silently praying that you take the bait and immediately slap your kid on the latest med. Oh okay, so maybe that is exagerrating, a little, but you know what I mean.

They had set the scene by being concerned about his reading skills, which are admittedly below par for his grade. We all know this already, and are working to resolve the gap between him and his peers. However, I don't want to justify medicating for ADD with a gap in his skills. Not so fast. There are many actions to take before resorting to medication. He does have problems with focus but he is still pretty young and there is still time for him to catch up.

Furthermore, he has not been formally evaluated for ADD/ADHD, so I tried to not freak out immediately and dig my heels in any one spot. I tend to make snap decisions in a lot of areas, but this is one that definitely deserves some thought. Coincidentally, Eli just had an appointment with the family doc yesterday for a meds check -- to see how he was doing with the Clonidine. I brought up the possibility of ADD and sort of got defensive, but checked it because this is not about me. It's about Eli and what will ultimately help HIM be most successful. I just don't want him to be defined by a bunch of labels early on, but if the labels help other people know what to expect with Eli, then so be it.

Our game plan at this point is conservative but aware. We are going to try to remediate his reading over the summer with books he might actually like and see how much that helps. Eli is such a funny kid -- he told one of the staff that the story she had just read was "The lamest story I ever heard" so I think there are better options than what the school is offering for reading. He has a library card already, so I am going to make more of an effort to use it. I also asked for the forms to fill out for ADD assessment and got two for his teachers next fall to fill out in October, when school has been in session for a bit and they know Eli better. We can better decide what course of action to take for him after that. If he winds up with another label, that's okay.

I am still really torn on the issue of meds. Ultimately, I feel the fewer he takes to alter his brain chemistry, the better. But I saw dramatic improvement firsthand with the addition of meds to help his sleep, so I am not shutting the door. I am more kind of peeking through it first.

Meetings--a hallmark of autism

Spring is here, and with it comes meetings. Reevaluation and IEP time. I feel for parents of newly diagnosed kids, as this can be a daunting experience if you don't know what to expect.
When Eli was three years and nine months old, I attended the first of many IEP meetings. Boy, what a difference a few years can make! That first meeting pretty much blew me out of the water. I think there were eight members of his team present, though the details are admittedly fuzzy now. What I do remember most of all was the feeling of defeat. I felt as though it was a session of "Let's pick apart every little idiosyncrasy this tiny kid has and make his parents feel like crap" though that was not the truth at all. I felt as though there were all these professionals present, and surely they must know what was best for him, and it made me feel like a failure as a parent. I cried afterward, though Miss Maggie and the other professionals present were quick to point out his strengths when I said something like "It seems like he has so many problems and nothing good in his favor."
Fast forward to today's meeting with his social worker at his current school. Totally different experience for me. I don't dread the meetings anymore, well, at least not so much. I feel far more empowered than I did back when he was a tiny tot. What made the difference? Knowledge. Experience. Confidence.
Knowledge with what his rights are under the law. Some of this has come from friends, most notably a dear friend in Alabama with a son a bit older than Eli. She has done this for years, and has been a valuable resource in so many ways. She advised me to research Wright's Law, so that I would be familiar with what Eli's rights are. Another great resource has been From Emotions to Advocacy, which I consult before important meetings that may have a contentious tone from the start. It helps me to put things into perspective--to take my emotions out of the equation for a while so that I can be the best advocate. Good advocates don't crumble into tears during meetings, nor do they make idle threats or lose their tempers. I am Eli's advocate as well as his mom, and I need to do the best job I possibly can.
Experience is very empowering for meetings. The unknown causes fear, uncertainty, maybe even a little dread thrown in for good measure. This is Eli's fifth year for an IEP. I know what to expect, how to prepare myself, and what to really fight for, if necessary. A good example of experience helping me was earlier in this school year, when there was no consistent aide for Eli assigned. He struggled daily for the first few weeks with different people being his helper (his term), and I could see immediately that this was causing problems. Rather than suffer in silence and wait for the school to deal with the situation, I insisted on ONE person being assigned and stuck to my guns. The problem was quickly resolved, with Eli thriving as a result. Without the experience of seeing what a consistent helper can do, I may have been content to allow the school to resolve the situation in a rather untimely fashion.
Confidence is priceless. I have limitless confidence when dealing with the schools at this point in time. I know without a doubt that I am going to get all that Eli is entitled to, and then some. I am no longer afraid of the meetings that help to define his educational experiences. Because that's what the meetings do, really.
I met with the school social worker today for an hour. We spoke at length about my sweet son and his social challenges, as well as his academic achievements. I don't hide our home life from them, as that would only hinder their efforts. Everything is laid out there--my divorce, the ever-changing occupancy of the house because of teenagers moving out and back in, the pets, the new boyfriend, the neighbors, Eli's ability to hold it all together at school all day only to let it all out at home. And I do know that he works so hard to hold it together, so if he loses it a little at home, oh well. I spoke about Eli's relationships at home with his siblings and how he loves the cats but merely tolerates the dogs. She spoke of how he is very loved at his school by adults and children alike--his inherent sweet nature and ready smile carrying him along. Both of us traded information, some of it uncomfortable to share, but all necessary for his success.
At the end of the meeting, she gave me the opportunity to share what I would like to see for Eli in the coming year. I said that I was frequently reminded of the movie The Incredibles, and a line that has stuck with me since I first heard it. "When everyone's special, no one will be." It was the scene was where Dash was discouraged from showing his talent, to hide it, so as not to diminish others' ability to run as fast as he could. I told her that I would like Eli to be praised for his successes publicly, rather than hiding them. I said, "No one thinks a thing about saying something to the effect of 'Joe is the best climber in the class!' or 'Cindy has the longest, prettiest hair!' but no one says anything like 'Eli can add numbers faster than anyone!'" So yeah. When he shines, I want people to notice, and he does shine in so very many ways. We all have gifts and we are all special, but in different ways. The fastest runner should not be the only one who gets noticed and praised.
Tomorrow is his IEP meeting. I am ready for it, and while I may jokingly say that I am putting on my game face, it's not really joking. I do have a game face, and it's ready to put on, should the need arise.

The Premier Post

Hello! Greetings from the beautiful midwest on this, the 47th anniversary of my birth. I was chatting with someone on Facebook who sent me a message saying he had enjoyed my old blog, Soapbox Mom, and he wondered if I had another. Well, I have thought about blogging again many times over the past couple of years, and what better time than the present to begin anew?


Soapbox Mom was a harsh blog in many ways. I had a lot of anger back then, and projected it onto the biomed parents I came across in my forum wanderings. For those who knew me well in those days, they knew WHY I was so angry. Really, it was frustration with my own world and relationships. They were a handy target. I still feel that some of the treatments that people attempt on their autistic youngsters are ridiculous and sometimes dangerous, don't get me wrong. But I have mellowed substantially over time.


Time passes, and if we are lucky, so do relationships and situations that cause us pain and stress. My marriage disintegrated, not due to the the challenges of an autistic child, but because of alcoholism. Suffice it to say that my husband and I are incompatible. Since our separation, we have both found more happiness in our respective lives, and hopefully, he will continue on building the relationship with our son that we both cherish.


About that son. He has grown and matured since then in ways I had never imagined. He is now 7, in a mainstream first grade class. He excels in writing, drawing and math, though he doesn't care much for reading. There have been invitations to birthday parties this year, and he wants to skip ahead to high school because, he says, "All the ladies are going to LOVE ME!" Too true. He is a beautiful, creative, and sweet boy who constantly surprises us with his budding sense of humor and keen observations.


I still wonder, and yes, worry about his future. I think this is natural, and I try to not fixate on the negative. He has so very many strengths to offset his weaknesses. He is friendly almost to a fault, asking fellow diners in restaurants their names and what they are going to order. He adores infants and will make a beeline for any baby he sees in a store or in the neighborhood, cooing and being generally adorable. When I try to discourage being this way, he counters with. "But mom, I am just being friendly!" And you know, he is right. What kind of world are we living in where people are discouraged from being friendly and neighborly? It's really a sad state of affairs if you think about it much....


Autism is part of my world and my daily life. We make accommodations for this sweet little kid. On the other hand, we expect great things from him as he grows. I am a firm believer that children will fulfill your expectations of them. Expect failure and trouble, that is what you will get. Expect success and greatness, and you will not be disappointed.


One last thing. The name of the blog, Mothership Captain. My house is called the Mothership by the entire neighborhood and our friends. Since I am the MOM here, I get to be the captain. :D You all get to be boatswains, if you like.