In 2008 I joined an online group for women expecting babies in December of that year. I needed to talk to other women going through the ups and downs of pregnancy, who could commiserate over our achy body parts we didn’t know we had, celebrate all of the little moments that you only “get” if you are expecting, and help me navigate the onslaught of information on parenting- how to choose a car seat, how to choose a pediatrician, natural birth or epidural, etc.
I went into this pregnancy with pretty high ideals- I was going to be a natural mom. A crunchy mom. A cloth-diapering, breastfeeding, baby-wearing goddess.
That didn’t actually work out as planned, at least not the first time around.
One of the biggest things I needed to consider as a parent, was whether or not to vaccinate my babies. And if I was going to vaccinate them…when, and how was I going to do it?
It was 2008, so I obviously read The Vaccine Book like it was the Bible. And I listened to every impassioned plea to not “overload” my new babies system with multiple shots at once. That was dangerous, y’all! Blood Brain Barrier! Scary shit.
And then some people were always talking about autism, but I didn’t know what autism was, and anyways I was plenty convinced by the “overloading the system” rhetoric- my boys would be following the Alternative Schedule set forth by Dr. Sears. The CDC was not going to dictate this one. I’m the mom. I knew best. I obviously knew better than our pediatrician.
So in November I had twins. We moved forward with the “alternative” schedule, and our pediatrician, who actually sited “vaccines” as one of his key interests, didn’t question our decision. We ended up going in like every other month or so to keep them on the schedule. This was after we had to drag them in every few days to get bilirubin checks, and every week for weight checks- what’s an extra appointment here and there?
Around 15 months we noticed that both boys had pretty much tapered off their language to nothing. We brought it up at appointments, but we were blown off. They were boys, they were twin boys they were identical twin boys, they were premature identical twin boys…you get the drill. Nothing to see here folks! Your babies are fine.
Except they weren’t. Something was different. They had a speech delay. I just knew it in my bones.
In the meantime we had another baby, and after almost 2 years of constant visits to the pediatrician for vaccinations, we decided that there was no reason to not follow the CDC schedule. Neither of the twins had a reaction to any of their shots, and it was seriously starting to get difficult to stay on top of visits. So boy #3 was vaccinated on schedule from day 1.
When the twins were 25 months old, after 10 months of questions and being told to “wait and see”, we had them evaluated for speech by early intervention. Halfway through, the person doing the parent interview asked me what I knew about autism.
How did we miss this?
Anyway, fast forward a few months, we have many evaluations, get a medical diagnosis of autism for both boys. Our pediatrician still didn’t believe it (“they are too young to know”), but he suggests we hold off on the MMR until they are 3 years old. He never said why, but I believe he didn’t ever want us to think that the MMR had something to do with their autism, and I’m grateful for him not muddying the waters.
Shortly after our boys had their first speech eval, they started school, and there was a small measles outbreak in Minneapolis. Some of the kids attended Minneapolis Public Schools. Some of those kids may have had contact with people who worked with the boys. You can bet I was a bit frantic as we sat there, no MMR, and now what? Do we get it NOW? Do we wait it out? In the end we just waited it out, and they were vaccinated at 3.5 years old.
Every time I take the twins in for a well-visit, I am met with my copy of the vaccination schedule we set up for them, stapled to their chart. It’s embarrassing to me that I was sucked in to making this choice for my kids. That I potentially put their lives, and the lives of others at risk, because I thought of it as just one more thing in the checklist of things crunchy moms did. It’s humbling to know that I was naive enough to be swayed by junk science, and anecdotes.
They didn’t get on track until last year, when they were 6.5 years old. After we got a letter from the school listing everything they were missing. Meanwhile, our younger boys (we now have 4 boys) have been vaccinated fully, and on-time, since day 1.
Since the boys’ diagnosis, I have learned so much about the fear-mongering that goes along with vaccinating your children. What I’ve learned is that this isn’t really something that is up for discussion for the vast majority of people. It’s not a choice. It is not the same as choosing to have an epidural, or to extended rear-face your carseat. Unless you belong to a very small group of people who absolutely cannot be vaccinated, you need to be vaccinated. On schedule. No questions. Vaccines do not cause autism.
As difficult as it is having special needs kids, I thought we were doing well.
As in, I thought life was good and we are making the most of a situation that you just don’t sign up for. We are good as a family, the kids are healthy and happy, we haven’t completely lost our minds yet (although tonight we were close), we have a pretty good support system set up for the boys with day treatment and school and therapies.
We are doing everything you are supposed to do to help your special needs kids succeed.
And I (naively) thought that other parents looked at us and thought- they are doing GREAT!
And then I read the comments on an article about the growing costs of special needs education and I felt suddenly like I live in crazy denial world.
Do people really look at my kids and think they are a waste of time, effort, and money? Do they really think that they should not have a public education? Do they really think they should just be institutionalized? Do they really think they are to blame for all of the budget woes of a school?
My kids are not on the severe end of the spectrum, but they aren’t on the aspergers end either. They are firmly planted in classic autism and they have a long road ahead of them. I don’t have a crystal ball, I don’t know what is going to happen in the future. I don’t know if they will grow up and have jobs or leave home or have families or all of those things you just expect to happen when you have a baby. I sometimes doubt it.
Then I have moments where I think *maybe* they will?
But to get there, they need all the help they can get, and that includes (but does not end at) the free and appropriate public education that every child in America is guaranteed.
We don’t ask for much. I am not demanding they receive ABA on Minneapolis Public Schools dime. They are (so far) pretty happy kids and we don’t have many behaviors that limit where they can be and who they can be around.
I am pretty sure the most extravagant thing the boys have ever received was a bus all to themselves for the first 7 months they were in school. When they were 2. But we didn’t ask for that, it’s just how it worked out.
I have many doubts about their ability to be mainstreamed, but they are 4, so we have time to see how things pan out there as well. I am completely OK with them being in a closed classroom. One commentator on the article suggested if they were unable to mainstream that I should just home school them.
I don’t feel equipt to home school my kids and have no desire to- special needs or not. Why should that be my only option?
Some people say that no extra money should be spent on any one student.
I don’t think that is entirely fair.
There are some demands I think are a out of the range of what is “appropriate”, but I think most parents who sit down to write an IEP have pretty basic goals and needs for their kids.
Another comment that really caught my eye was that some parents of special needs kids are only sending their kids to school for the free babysitting, simply because they need a break.
Do you know any parents who are not rejoicing in the streets at back-to-school time because they need a break from their kids? I think that is a universal thing and I will totally cop to being happy as hell that my kids are in school full-days because I simply cannot give them the structure they need at home 7 days a week.
That doesn’t mean I’m pulling one over on the school district. It doesn’t mean they are not learning at school. It does not mean they are not thriving there (and our definition of thriving is probably much different than yours). It does not mean they should get anything less than any other kid.
I wonder if people who think this way have any idea what it is like to raise a special needs child. If they have any idea of the stress and isolation and havoc it can wreck on your life? I am guessing they don’t, and if they do they have chosen to turn a blind eye to the struggles, because I can’t imagine anyone telling someone to their face that their child was unworthy of a public education and should just be locked away simply because that child is different.
I know I shouldn’t read comments on stories like that- I guess I just expected a little more from my Minnesota neighbors. Maybe this is part of building my thick skin.
The last few weeks have been kinda crazy at our little house.
L and W started swimming lessons at a therapy pool and it is really going great. At least the lesson part! They are enjoying themselves and progressing each week and they love their instructors.
The hardest part for me, as with all things related to being a twin mom, is the logistics of getting everyone from point A to point B in one piece. And this endeavor includes getting out of a parking ramp, crossing a courtyard (while one leans away and lets me hold up the brunt of his body weight and the other tries to walk ahead without holding my hand), getting one twin ready to swim, keeping the other one under control while he waits for his lesson, and then getting them both dressed and back to the car.
So far I haven’t done it on my own and judging by their behavior the past two weeks, I am not encouraged that I will be able to do it by myself. Last week the session ended with L making a break for it and running around the pool as fast as he could when I was getting W out of the pool. I went after him, another mom ran the opposite way around the pool(Thank You other mom!) and the instructor tried to get through the pool in case he fell in.
Talk about a heart attack. He is quick and he likes to bolt. Safety is a huge concern when it comes to him and I never feel like I can handle him on my own- let alone with his brother in tow. But, there aren’t many options, so this week I will be on my own. I’d be lying if I told you it was going to be OK- thinking about it makes me want to throw up.
I’ve started sitting in on the boys sessions each Monday and Tuesday. The boys don’t seem to mind so far, so as long as they have good sessions, I will continue to do it, it’s good for communication with their various therapists. One of the things that was brought up a few weeks ago was that we might want to try a gluten-free diet for L. I have been putting this off for years, I just am not convinced it’s going to make a difference. Eventually they will want us to go casein-free as well, which seems ridiculous considering 75% of their diet is dairy at this point.
So, we bit the bullet and went gluten-free. The boys are still spending down their lunch accounts at school so they aren’t 100% GF yet, but they will be starting next Tuesday. So far, it’s been OK.
It looks really easy from the onset- meats, fruits, veggies, dairy are all fair game. It’s once you get into cooking and baking that you start to realize it’s trickier. We ate mostly from-scratch meals to begin with and snacks were granola bars, cheese sticks, and occasionally crackers. Boxed mac and cheese and Zatarains Jambalaya rice and cereal were they three big processed foods we ate on a regular basis. They loved Corn Chex for breakfast, so we thought we were good there because they are gluten-free. Now that they don’t have the option of choosing Life cereal, they want nothing to do with Corn Chex. Of course. They also don’t want cheese sticks or fruit for snacks. Yogurt ends up on my dining rooms drapes, smoothies are too difficult to drink, anything too crunchy (veggies or nuts) doesn’t get past the lips.
They want carbs.
I am having trouble figuring out how to keep them happy for breakfast, lunch and snacks- they aren’t eating dinner at all, but that wasn’t really happening before we went gluten-free. I am struggling. Seriously. At the end of this trial period, there had better be a marked change because my kids are going to be losing weight like crazy if they keep up like this!
This is what makes me the most insane when dealing with treatment for autism- it’s all a total crapshoot. For every person who says a gluten-free/ casein-free diet changed their ASD kids life, there is one parent who it didn’t make any difference at all. Nothing is easy- there is no magic pill to help with behaviors. Oh how I WISH there was an option for a magic pill and it was my choice as to how I was going to deal with this! It’s all nice and good to skip the pharmaceutical route when you have the OPTION to do so. It’s completely different when your life is an uphill battle of therapies that may or may not work and you have nothing to fall back on but more therapies that may or may not work.
Sometimes, I wonder what difference any of it makes. My boys have made progress over the past two years, but I still cannot imagine them mainstreamed at any point of their lives. I don’t see them ever living on their own. I don’t see them having romantic relationships or families or jobs. And yes, I get it, they are only 4. But, I just don’t see it. They aren’t going to be those kids who test out of their diagnosis. I know that. And I am OK with that. I don’t feel a need to fix them. I don’t feel a need to figure out why they are like they are.
Wow. I think I will stop there before I write a novel- there is plenty more in the Autism Files.
There is so much that goes into having a diagnosis of autism, so many decisions to be made, so many things to think about that you didn’t even know were things.
Like when to tell your kid(s) they have autism.
We have always used the word and talked about why we go to Fraser and how their little brains work in their own special way. It never occurred to me that some people didn’t tell their kids- like having an aide in the classroom and marching in to therapy after school was what everyone does. I have to think that at some point, the kid is going to figure out that something is different.
We are pretty open books here- there are not a lot of secrets. They both know that L was born first and he is older by one minute. Apparently this is a thing amongst parents of twins (they can’t both come out of the *same* time…). They have heard the story about a hundred times about how we found out there were two and how W was a total surprise (and the biggest and best surprise of our life!).
Back to Autism.
Now, my kids are 4 and I am fairly certain that they have no idea what it means when we talk about autism (or birth order), but we talk about it, we have since day one when they were 25 months old, and we will continue to talk about it. One day they will understand (or not), and when that day comes, I hope they will see that autism is not something to hide or be ashamed about, something adults speak about in hushed tones while tossing out looks of pity and helplessness.
Autism isn’t something that fits into a neat little box that only comes out when we let it. It is part of every single minute of our day. It’ is difficult and messy and some days I want to kick it in the ass and never deal with it again. That isn’t likely to happen.
So, we embrace it. As much as we can.
L always says “I have AWESOME!” And he is right on the mark.