The Great Vaccine Debate

As an autism parent, you are either pro- or anti-vaccinations. There's no middle ground. There just isn't. Either you believe the MMR vaccine caused your child's autism or you think those who believe that are crazy. As autism parents, we have enough on our plates without worrying who's going to open the flood gates and start WWIII over vaccines.

But here's the truth: y'all are equally crazy.

When I was a few weeks old, after a severe bout of jaundice left me "untouchable" and in a box for three days, I developed a bout of pertussis, more commonly known as whooping cough. I almost died. Now, more than 20 years later, most mothers and babies are vaccinated for whooping cough, saving roughly 200,000 children each year.

However, with the anti-vaccination movement gaining momentum, more and more cases of vaccine preventable illnesses are cropping up. It begs the question, if vaccines cause autism, and more and more people are refusing vaccinations, how come the autism rate is still increasing? Shouldn't it be going down, or at least stabilizing?

The answer is, neither group is correct.

The debate doesn't have to be black and white. If parents would put aside their guilt and their god complexes, we could all get along nicely and support each other like we should.

In Caiden's case, his autism wasnt caused by a vaccine. He was delayed before he received his MMR vaccine and regressed six months after he received any vaccine at all. We never noticed any problems with him around the time he got any of his vaccinations.

However, he's just one child. This doesn't mean another child didn't have adverse effects to their vaccines just because mine didn't. People are different. They react differently to everything around them. Some people can't handle dairy, some its nuts, or gluten, or penicillin, or codine.
Pick your poison.

With anything we take into our bodies, we run the chance of having an adverse reaction to it. Some do, some don't. This can be why we often see identical twins, one with autism, and one without. Or one with an allergy, one without.

If the pro-vaxer could say to the anti-vaxer, and the anti-vaxer to the pro-vaxer, "I'm sorry your child developed autism," instead of fighting over the "why" we could do more to help each other.

There is absolutely no need to force your opinions down someone else's throat. You CAN have a civilized discussion without fighting, and not one side has to be 100% correct.

Yes, the why is important, but there's no sense in fighting over it. As autism parents, we have a hell of a lot more to worry about than something we can't change. None of our personal opinions on the matter are going to help find the answer.

Now here's my opinion because you're reading this and I'm choosing to share it with you

Autism doesn't have to be a result of just one thing. The final answer, the "why" doesn't have to be just one thing. You don't have to pick between vaccine's causing it or genetics causing it. You don't have to pick pollutants or GMOs causing it. It could be a combination of many. The key thing is, we don't know yet, but at least we can be thankful that it's being worked on.

In the end, you have to make a decision though. As a special needs parent, and someone who almost died of a vaccine preventable illness, autism isn't the worst thing that can happen to your child. Sure it isn't what any parent wants for their kid, and it's a fucking difficult path to walk, but the end of the day, having an autistic kid is better than having a dead one [from a preventable illness].

Another Specialist

Monday we drove four hours round trip to see a diagnostician (prerequisite to seeing a geneticist as they don't have enough appointment slots). What I expected to be an hour long appointment turned into four!

The doctor we saw was AWESOME. She took a very, very extensive history and even knew what HELLP was! Considering its a rather rare condition (and not part of her specialty), her knowledge of it speaks volumes. We got a LOT of information, so bear with me here!

She started with a typical physical, he's 34.5lbs! And still has a big head at 53cm, up 1cm from June. Then had him walk around the room. He has wobbly knees. Basically, he doesn't have the balance or the strength to hold himself up which causes him to fall a lot. He compensates by walking funny. He walks with his feet pointed out and his knees slightly inward. It needs to be corrected at some point, but if he hadn't altered his gait, he wouldn't be walking at all.

There is some concern about his heart. Caiden's heart rate and blood pressure were high and with a family history of hypertension, she wants our regular pedi to monitor it. Also, one side of his chest is slightly sunken in. She doesn't know of its muscle related or skeletal, so Caiden needs an EKG, heart echo and chest x-ray.

She noted along with his huge head, he has a very prominent upper lip, and droopy eyes (made more noticeable by the fact that he was exhausted yesterday), and thinks we may be on the right track with suspecting fragile x.

Good news is, while we didn't get to meet with the geneticist, she was able to consult with him/her while we were in the office and get his/her recommendations on additional tests. The diagnostician was able to provide enough medical evidence to prove the necessity of the tests and insurance approved it! We were able to have the labs drawn while we were there which should cut down our wait time.

Aside from the fragile x and microarray labs, Caiden had four others drawn:
• repeat CPK to compare to the previous two
• hypotonia panel to check for conditions such as muscular dystrophy and spinal muscular atrophy and other conditions that can cause hypotonia
• PTEN panel to check for very specific conditions related to the PTEN gene. They can be responsible for various cancers, tumors, heart and muscular conditions
• An aldolase test, very similar to CPK, measures an enzyme also related to muscles. If its high it'll let us know to check for muscle damage, heart damage, cancers like leukemia and pancreatic, muscular dystrophy, and rare genetic conditions related to the skeletal muscles

Our neuro has decided we only need to go back if the CPK and/or aldolase tests come back high (we'll need to discuss a muscle biopsy because of the added heart concern), or the genetics come back with something. If we see Caiden regress again he wants us back in immediately and we'll discuss his brain issue again, but we shouldn't need to see him regularly anymore.

Our pediatrician is sending us straight to a cardiologist to do the tests concerning his heart, so we're adding another specialist there.

So, if you followed all that, here's a list of Caiden's diagnoses to date:

1- Autism (ICD-299.00)
2- Hypotonia/ataxia (ICD-781.3)
3- MTHFR (ICD-270.4)
4- Tachycardia (ICD-785.0)
5- Cerebral Microcephaly/Global Cerebral Atrophy (ICD-742.1)
6- Developmental Delay (ICD-783.4)
7- Deformity of Chest and Rib (ICD-783.3)
8- Congenital Abnormalities of skull and Face Bones/Macrocephaly [his giant head] (ICD-756.0)
9- Congenital Abnormalities of Face and Neck [facial features] (ICD-744.89)

Fuck You Holland; The Diagnostic Process

If you follow our Facebook page, and if you're reading this, you probably do, then you likely have an idea of where I'm going with this post just based off the title. Yes, I'm tackling the hellish process that starts with the initial concern to the final diagnosis. We haven't gotten to the end of the journey yet, but I have a pretty good idea of where its headed.

There's a poem or short story entitled "Welcome to Holland" that keeps making its way back to me. If you've had a preemie or something unexpected happen, you've likely read it too. It compares an unexpected event to boarding a plane to a vacation in one country, only to end up in Holland instead. Sure its not where you thought you were going, but you can enjoy Holland anyways.

I hate that story.

The important thing its missing is that while the destinations are totally different (what you expected and what you ended up with) and can be great, the author fails to mention that the trip to Holland is full of turbulence and the plane is lacking seat belts and sick bags.

I like to think the ridiculously lengthy process is like a car ride instead- mainly because planes don't really fit the metaphor I'm going for here. But its no ordinary car ride. Its like getting in and knowing you're going to be in an accident (because no one wants to invision a plane crash). You don't know when it'll happen, where it'll happen, or how badly you and your fellow passengers will be injured, you just know its going to end badly.

When we first strarted noticing something was a little off with Caiden, we prepared. We went over all the maps we could lay our hands on, buckled our seat belts and obeyed the speed limits. And yet, we still managed to hit all the potholes, miss turns, and sit through green lights. When we finally got to the diagnosis, we crashed into it and walked away with a case of whiplash.

After Monday's appointment with the diagnostician (read the full update here), I feel like we're back in that car, barreling down the road with our eyes closed bumping into everything in our path. Were going to crash into the test results, and this time we might not walk away from it.

I'm quite honestly petrified of what his labs will tell us. I'm also scared they won't be able to tell us anything and we'll be back to where we started only having to try again. We can handle autism. I don't know if we can handle some of the other things they're testing for.

I thought that getting Caiden's ASD diagnosis would be the worst part of this whole process (remember its taken is a year to get to this point), but while the diagnosis part definitely sucks - as important as having answers are, its definitely the waiting. By the time we got his official diagnosis, we already knew that's what it was and were actively addressing the issue. The wait had given us enough time to confirm our own ideas and get the ball rolling on managing it.

This time, we don't have that luxury. We're left with no leads, no good ideas, nothing to fill up our spare time and no direction to head in. The stress seeps into your bones and everyday its there reminding you, one of these days, they're going to call, and you're going to crash.

But like an idiot, you keep getting back into that damn car, because if you don't, you'll never know where the road finally ends and what the diagnosis is. Its not strength that gets you through the day or causes your knuckles to turn white as you grip the wheel, because really, you do what you have to as a parent no matter what. If it were your child, you wouldn't give up either.

What keeps you going is the chance that maybe you won't crash when you stop. Maybe the answers won't be as bad as you fear. Its the hope that maybe it'll be okay and the constant pain in your heart will eventually subside.

Because when it's your kid, you don the armor and go to war, even when you're already broken.

Official

Yesterday, we got Caiden's official autism diagnosis (on paper). For a kid who just turned two a few months ago, he now has a pretty lengthy list of issues, and we're still waiting on several things to know if we'll be adding more. To date, he has been diagnosed with:

Autism Spectrum Disorder
Ataxia
Hypotonia
Developmental Delay
Cerebral Microcephaly
Global Cerebral Atrophy
MTHFR

Its taken almost an entire year to get ASD put on the list, and nearly as long for the rest. It's been tremendously exhausting, and we're not even finished yet.

Our appointment yesterday was a follow up from June with the developmental pediatrician. We went over test results, and she wanted to see how therapy has helped, along with discussing our concerns. Top of my list was autism.

I was worried she was going to be resistant to diagnosing him, and I was right.

It wasn't until we were getting ready to leave that she decided to have me fill out a few questionnaires because his behavior "didn't make sense" to her. He "kind of" fit has some behaviors she wasn't sure about, so she didn't want to diagnose him. Big surprise, he scored very low, even among kids like him, in all areas, so she went ahead and finally put it on paper for us.

We discussed medication. Caiden is still a bit young for anything, but if his meltdowns become much worse we were told to consider it. He's large enough (33lbs and 39in) that he would be able to take it if need be. We're hoping to stay away from medications as long as possible, but its reassuring to know we'll have it as an option if it comes down to it.

I admit, though we've known for a while that he's autistic, I teared up a bit when she told me she was finally going to go ahead and diagnose him. On one hand, I'm relieved we were finally taken seriously, hopefully now we'll be able to get him more services and things will get better. But, part of me still hoped we were wrong, that it was just a development issue.

Getting confirmation that your child is disabled is hard. I have a lump in the back of my throat that just won't budge. Things might get better, but this isn't going away, no matter how much therapy he gets. The rest of our lives will be spent fighting for services and worrying about bullies and what's going to happen to him when we can't care for him anymore. We're going to have to be his voice. We have to throw away the future we envisioned him having (again), and try to imagine a new one with autism.

Regardless of whatever additional diagnoses he ends up with, he's still Caiden. He's still the same giggly little boy, and we still love him the same. If anything we'll hug him tighter now, we'll appreciate the little things he does and stand in awe over the progress he makes.

We'll learn to live in the moment and not by the milestones. And with this cutie pie to share them with, that's alright with me.

Parental Abuse

There's a woman named Kelli Stapleton. If you're part of the autism community, you've no doubt heard of her. She is a 46 year old mother and once prominent blogger and autism advocate.

She's also a victim of parental abuse, a topic that is severely under reported and under researched.

Kelli has a 15 year old daughter who is severely autistic. Autism is a very lopsided spectrum. Only an estimated 7% of cases fall on the severe end. A majority of the rest are high functioning and Aspergers (often considered the same thing). They are typically non-violent and the children you hear about winning kids Jeopardy! or are music or math prodigies like Jacob Barnett.

The Stapleton's, like many families with autistic children, struggled to get their daughter the help she needed. For severely autistic children who are also prone to violence, help is often out of reach and/or unavailable.

[Read mom, blogger, author and advocate Liza Long's novel on mental illness, her son's violence and the school-to-jail pipeline here.]

When a severely autistic child has a meltdown, they can get violent. These meltdowns can last hours, often with no apparent triggers. As toddlers, they hit, punch, kick and bite, and the target is usually the primary caregiver- mom, who is only trying to keep her child from injuring themselves. As these children age however, they get stronger.

In an article published by NBC news, one mom, who's child attended the same facility as Kelli's daughter, is quoted saying, "the punches no longer become bruises, they become knock outs. The kicks become fractures and broken bones," in regards to the impact age/size has on the violent meltdowns.

Kelli's daughter had a history of injuring her mother, sending Kelli to the emergency room at least twice in the time leading up to her daughter's placement in a facility for intensive treatment for her autism.

The Stapleton's were trying to get their daughter the care she needed, but when plans apparently changed, Kelli snapped.

In September 2013, Kelli and her daughter were rescued from their family van suffering carbon monoxide poisoning. The source- two charcoal barbeques Kelli had lit in an attempt to kill both herself and her daughter.

Kelli recovered quickly while her daughter was in a coma for several days, but eventually did recover completely with no adverse effects, or even the understanding of what happened.

Kelli is currently incarcerated on charges of attempted murder, which she pleaded guilty to. She faces up to life in prison.

There is no excuse for trying to kill your own child. As an outsider likely facing a similarly troublesome future with my own child, I pity this woman and her family. As hard as it is to find appropriate help and care for a violent child, there are options when all else fails that do not include attempted murder.

There are residential treatment centers around the country to step in and house and care for these often dangerous children and teens. A parent has last resort options such as an RTC, or regrettably, giving up parental rights completely, forcing the state to provide otherwise unobtainable care.

There are no good options for parents of severely autistic children, however murder-suicide shouldn't even be considered as one.

There's something we seem to have forgotten as a culture. Empathy.

Empathy is defined as "the ability to understand and share the feelings of others."

While I can't condone what Kelli did, I understand, and I feel horrible that she felt death was their only option. Parents who have violent children often show the same behaviors and emotional trauma as victims of domestic abuse such as flinching, walking on egg shells, hiding injuries, etc.

Kelli is a parent who was abused by her daughter and snapped. No one should be injured at the hand of someone they love, and yet parents of violent children are expected to put up with the abuse and "deal with it" because its their child.

These parents need options. They need to know they have options, and they need to know how to access them. They shouldnt have to choose between pressing assault charges on their child, or signing away their rights. Instead of reading headlines and labeling this woman as a monster, try to image how well you would fare after 15 years of abuse and being unable to do anything about it. She likely felt she was the only one who could handler her daughter, and only killing herself would only force someone else to take her place. If she couldn't handle her as her mother, she likely thought no one else could.

Again, murder should never be an option. This woman made a terrible decision, and committed a terrible act. She should be punished for it. However, I think this case offers a unique opportunity.

Autism does not need awareness, autism needs action. Affordable, quality care needs to be accessible to all affected by autism. Parents shouldn't have to suffer through months and often times years of waiting lists and "I don't know" answers to get their kids help. Behavioral therapies such as ABA (applied behavioral analysis) need to be available and included as part of the typical therapy approach when managing autism.

As a culture, we need to remember to have empathy whether or not you agree with a persons actions. There are millions of people in the world suffering through unimaginable trials, and its no ones place to judge how they deal with it (criminal trials aside), but we can all take a moment to consider how they must feel before criticizing.

Family History

When I was 15 weeks pregnant, I walked out of my OB's office sobbing. We had just found out that the baby I was carrying, was a boy. I was ashamed to tell anyone about my reaction. He was healthy, so what did I have to be upset about, people would say. 

They didn't know shit.

For me, the news that I was having a son and not a tiara wearing princess, wasn't about gender preference, it was about genetics. And fear.

I grew up with an older half sister, and a younger brother. My sister was a few years older than me, and had a few physical problems, but nothing that made life too difficult. I remember her having to wear a back brace to bed at night for a while, but to me, she was no different than anyone else. I looked up to her, and until my mid-teens, aspired to be just like her. She was normal; popular among her group of friends, smart, and beautiful.

My younger brother, on the other hand, was about as far from normal as a kid could get. He was only 16 months younger than me, so everyone expected us to be great friends. We were anything but.

One of my earliest memories is of my brother's first psychotic break. We had both gone to school that day as usual, but on the bus ride home, he was absent. I thought nothing of it until I got home and found our mom in tears.

She confessed that he had had an episode while at school, and was away to get help because he was sick. My brother was gone for three days. I later learned that he had been placed in a children's psychiatric hospital, beds complete with restraints, after running away from school with a knife, after threatening to kill the principal and her family.

He was barely nine.

For years, I watched my mom struggle to control my brother. His outbursts became full on rages. The "people" in his head apparently grew louder and pushed him to do unspeakable things. Not too long after his first hospitalization, did he attempt to drown me in the neighborhood's public pool. On more than one occasion I watched as he tried to hurt our mom, or attempt to take his own life.

Our house was filled with drawings that didn't make sense; arrows pointing to corners, circles overlapping circles. They stayed taped to the same spots so long, when we finally moved the walls were whiter underneath.

My brother is 20 now, having just celebrated his birthday not too long ago. I haven't seen or spoken to any member of my family now, for almost a year, for unrelated reasons. At my last count, my brother had been committed somewhere around seven times, the last three falling closer together than the rest.

I never knew my brother's official diagnosis. Our mom never cared to share it with us, and I never thought to ask. I knew he scared me (and still scares me), and that was all that mattered at the time. The more I think about what he was like growing up, the more obvious it is what kind of condition he has.

My mother used to tell me that I'd make a great mom. I'd been the rock for our family, helping to raise my brother when her disabilities got in the way. I'd understood and withstood my brother's assaults, and still stood up for him to the bullies. I could handle him. If I ever had a child like him, I'd be prepared. I would know how to fight for him, how to care for him, how to stay strong.

As with many other things, my mom was wrong. Having a child like my brother was my biggest fear.

My own son, is as different from my brother as they are alike. I lived in fear of the unknown until he was born. His early arrival overshadowed every concern I had once had. He grew and as we left the confusing world of prematurity behind, I let my guard down.

Until his regression.

When Caiden lost his words at 18 months and started getting violent, my first thought was autism. My brother's illnesses were the last things on my mind.

Eight months later, we have few answers and dozens more questions. I find myself wondering if there's more going on in his head than we realize. Could his smaller brain size be affecting the delicate balance of his chemical levels? What if his extreme behaviours aren't from autism, but bi-polar disorder, or worse, something akin to my brother?

Over the last week, we've seen a behavioural regression. When we started therapy, his meltdowns all but disappeared. Now they're back with a vengeance and I find my heart aching for normalcy.

I watched my brother punch himself in the head and put holes in walls for years, and barely batted an eyelash as I attempted to restrain him, oftentimes getting injured in the process. With Caiden its different. Each time he falls into a meltdown, it feels like I'm drowning. There is something so fundamentally wrong about watching your child writhe on the floor, screaming to the point of choking, and being completely unable to so much as touch him.

Sure, I know how to fight for him. I know how to pester doctors into giving me the appointments and the tests I want. I don't always know how to handle a toddler who instills a fear I have never known before.

I fear he will hurt me one day. Even at just two years old, he's strong enough to now.

I fear he will follow the same path my poor brother did, and that his youth will be stained by hospitalizations.

I fear he will never get all the help he needs.

I fear we will never know what makes him so different.

I fear one day he'll regress so far that we'll lose him completely.

I don't always know how to stay strong for him. Sometimes his meltdowns include equal amounts of crying from the both of us.

What I do know, is how to love him. I love him like no mother has ever loved her child before. I have lived a hell other parents don't dare imagine. Each day, he breaks my heart, and each day, it is only he who can put it back together.

Sometimes, on the rougher days, you have to dig a little deeper to find your courage, to grasp your shield and face the lion again. I am not special for facing another day, another battle. I do it simply because I must, and to fail to do so, is to fail the one person who needs me the most.

The Cliff

There's a quote by Ray Bradbury that has cemented itself in my mind. Its one of those things that keeps coming back to you no matter how hard you try to forget it. I think I heard it in high school and I keep stumbling upon it now in my adult life. It goes, "Go to the cliff and jump off; build your wings on the way down." I always thought it was about taking risks and learning as you go, but recent events have made me really think about this idea and what it actually means.

Last month was a good month with Caiden. We have learned how to better prevent meltdowns and how to interpret what it is he's trying to communicate.  As a result, our home has been a much calmer place. It came with a few obstacles though.

Blood work. The developmental pediatrician we saw the end of June ordered a ton of blood work. Things like lead leavels and thyroid function only grazed the surface. We had been putting off getting him tested for the clotting disorder I have, because we were quite frankly afraid of the battle that would take place. Now with these new labs ordered we had no choice.

To our surprise, he actually did well. It only took four people to hold him down, and though he screamed bloody murder the entire time, he was calm as soon as he was allowed to get up. He even got a prize after!

We have most of the results back, and unsurprisingly so far most have been normal. We're still waiting on his chromosomal microarray (looking for deletions or duplications on each of his chromosomes) and fragile x (a genetic abnormality on the X chromosome). Aside from the clotting disorder (which he does have), the one blood test that was abnormal was something called CPK.

CPK stands for creatine phosphokinase. Its an enzyme that your body produces when the brain, heart or muscles are damaged. His levels were slightly elevated but for no clear reason. We were told not to worry about it, it could be nothing.

He had appointments to get his eyes and hearing tested. Both went well, his eye sight is perfect and his ears work just fine!

Then, on July 28th, we had possibly the most important appointment to date. His MRI. Because of his age, Caiden had to be sedated. Totally routine, but we were warned he may wake up a little... grumpy. And grumpy he was. He left quite the impression on the staff when even the morphine they gave him didn't calm him down after he woke up. Eventually he did calm down and we were able to go home, and wait for the results which were supposed to be available later that day.

We waited.

And waited.

And called the doctor.

And waited some more.

Then we got the news on Friday August 1st (for some reason I cant get around August being a bad month).

Global Cerebral Atrophy.

His entire brain is significantly smaller than it's supposed to be and isn't expected to catch up completely. It has either stopped/slowed in growth or shrank. And right now, they have no idea what caused it.

The brain naturally shrinks with age, but this kind of damage is something thats typically seen in people with alzheimers, traumatic brain injury or serious illnesses like MS, none of which he's had.

It puts him at risk for seizures, cerebral palsy, dementia, and aphasia (a condition that hinders you from being able to communicate)- something we're already seeing.

Prognosis varies depending on the cause, type and location of damage, but its a degenerative condition by nature. If his brain has stopped growing, he will likely be stuck at the development he's at now (a one year old). If its growing slowly, we need to get him as far developmentally as we can before his brain does stop growing. If its shrinking... he will continue to regress and the condition would be terminal.

He will need additional MRIs throughout the his life to monitor the growth/shrinkage and to determine what exactly is going on.

Its seemingly rare in children, especially since his entire brain is affected and not just one part, and he has no history of illness or injury. Hopefully, the remainder of the blood work will let us know if there's an underlying condition but for now... all we can do is push him in therapy and hope that his brain doesn't shrink but continues to grow.

"Go to the cliff and jump off..."

I feel like I've been pushed off that cliff, the fall totally out of my control. I'm still a bit in shock. It seems a bit unfair, after all we went through when he was first born, this information was devastating. We started this crazy journey expecting to hear that Caiden has autism. Instead, we found out he has a potentially terminal brain condition. Even if its not terminal for him, he won't be "normal" like you and I. He is considered disabled and as having special needs. He has unexplained brain damage. Hopefully, with enough therapy, he'll be able to lead a relatively normal life though.

"...build your wings on the way down."

No matter what the future holds for him, he will always be my baby. I don't love him any different than I did before we got the news, and that wont change as we figure out more of whats happening in his body. We will take what comes and learn from it, grow from it, and encourage others to do the same.

Caiden has always had the ability to put a smile on the faces of the people who meet him. He is a happy little boy with a beautifully contagious laugh. He is in essence no different from other two year old boys, he plays with cars, balls and sticks and has an uncanny ability to accumulate dirt. His brain is just a little different, a bit more baby-like than it is toddler.

He deserves love, understanding, and complete acceptance of the person he is and will become.