Tuesday, December 9, 2014

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].

Thursday, December 4, 2014

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.

Thursday, October 16, 2014


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
Developmental Delay
Cerebral Microcephaly
Global Cerebral Atrophy

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.

Tuesday, September 16, 2014

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.

Sunday, August 24, 2014

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.

Sunday, August 3, 2014

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.

Thursday, July 3, 2014


One of my biggest dreams is to see my son kick a ball; see him pick up a fork and feed himself; see him walk without stumbling or falling; hear him say "I love you" or even his name, or a number... a letter... a color...

Caiden can't do any of those things. He's like a one year old, stuck in a body the size of a three year old. But, he's only two.

I hope that one day he'll resemble whats considered "normal" but I'm not deluded. I very well know he may never do those things. He may never play with other kids, or get out of diapers. He may never get a job, or live on his own. He may never be able to tell me he's hungry, or tired.

If he doesn't, I'm prepared for that. Well... probably not, but I know its a possibility and accepting it now will only help later on. I'm not going to give up on trying to teach him those things though.

Most importantly, I want him to grow up and be happy.

He begins therapy in just over a week, so that one day he might be able to do things other kids do. So he can function without getting overwhelmed and exploding. Unfortunately there was a problem getting him started with speech therapy, so that will take a bit longer. I'll probably see him kick a ball long before he says his first sentence.

But, as a special needs parent, you quickly find out thats perfectly fine. Progress, no matter how small or seemingly insignificant is something to be celebrated.

Right now, I'm not worried about how quickly he'll pick up these new skills. I'm worried if he'll even get the chance to try.

We dont have a way for him to get to a majority of his therapy and various doctors appointments. Our family only has one car, used by my husband to get to work everyday. Unfortunately, he works long hours to provide for us since Caidens needs are such that I'm unable to work.

We need a second car. Solely for Caidens transportation.

Herein lies the problem. We are only in our 20s. We cant finance a car because we have no credit... and we cant build our credit... because we have no credit. We're stuck in that stupid loop.

We started a fundraising page to help us pay for one.

We aren't asking for 20k for a brand new car. We just need something safe and reliable to get Caiden to therapy. The reality is, if we don't find some way to purchase a second car and soon, Caiden may only get a tiny fraction of the therapy he needs because we just wont be able to get him there.

I feel like if it were for a service dog, we'd have gotten at least a little help by now, but we haven't raised a penny. Without this therapy, we wont even know if he'd benefit from a service dog.

It saddens me, that despite everything he's faced and overcome already, he's being held back by this. If my husband worked night shift, or if Caiden were able to be left with a sitter, it would be a different story. However this is what we're dealing with.

We need your help.

Therapy is Caidens ONLY chance of having a normal life. Could you imagine your child starting kindergarten and not being able to speak or feed themselves? Without therapy, that will definitely be Caidens near future.

Even if you can't donate, we are asking that you please share his page and hopefully with enough traffic and people seeing/sharing, we can reach those who can. Every dollar, every penny even, is appreciated and gets Caiden that much closer to therapy.


Sunday, June 22, 2014

Happy Birthday!

Caiden turned the big TWO yesterday! To celebrate we went to my mother-in-laws and had a tiny party for him. We originally were going to take him to the zoo but it was too hot. Instead we got him a cute little cake and he got to open presents and play out side. We were nervous how he would do transitioning but he surprised us!

He was afraid of everyone singing happy birthday and wouldn't even touch the cake to take a bite, but in the end I was glad not to have to deal with a sugar rush/crash. After cake and presents we took him outside to play with the water hose. I expected him to freak out, which he did, but once he realized he could splash in the bucket we had pulled out, he had a blast! At the end of the day he was soaked and thoroughly exhausted.

He certainly had no idea what was going on but overall I think he had fun, so it was a good day.

Unfortunately, as fun as his birthday ended up being, it was overshadowed by a sobering reality.

Thursday was Caidens evaluation with the developmental pediatrician. I was nervous that when we got there he would behave differently, like he does in each new environment. And I was right.

Caiden, while he gave the nurse taking his measurements a hard time, he loved the doctor. He was even throwing a ball they had in the room back and forth with her. She explained that he has all the traits to diagnose him with autism, but his eye contact was too good. She wants to see him in another few months to reevaluate him to see if anything changes.

However, though we dont have an official diagnosis yet, we did get a few answers.

Caiden has something called hypotonia. Basically, he has low muscle tone and the muscle he has is weak. This is why he still cant kick a ball, crawls down steps and has trouble feeding himself. The good news is that it can be improved with physical therapy. The bad news is, its likely caused by cerebral palsy.

Cerebral palsy is pretty common among preemies and is caused by trauma to the brain. Most preemies are scanned for brain bleeds shortly after birth due to the trauma the birthing process can due to an underdeveloped baby. Since he was born past the cut off date at our hospital he was never checked for them. He now needs an MRI to confirm or rule it out.

On top of that, he has a severe developmental delay. Though he's now two years old, his development is equal to that of a 12-14 month old. We knew he was behind since he's nonverbal, but just how far behind he is was a huge blow.

Even more surprising was what the doctor believes is responsible for his delay: fragile x syndrome.

Fragile X syndrome is "the most commonly inherited form of mental retardation." Its caused by a mutation on the X chromosome and is seen predominantly in males. Its characterized by problems such as developmental delays, behavioural and socual issues, hand flapping, and hyperactivity. Those with the full mutation tend to have very distinct facial features including a long face, protruding ears, prominent forehead and chin, and a large head.

Caiden has a seriously large head. It measures 52.2cm and is above the 100th percentile for a three year old, never mind a two year old. His ears are set lower than normal, and he has a large forehead. If you google image search fragile x there is a picture of a boy, probably 3-4 years of age, and if you can get past the obvious differences (like age and hair color) Caiden bears a striking resemblance. Caiden could be the poster child of this syndrome and it hasn't even been confirmed yet whether or not he has it.

If the test comes back negative, my husband and I have already agreed to have it run a second time. There's no way, after looking at all the evidence, that he doesn't have it.

Along with genetic testing and the MRI, the doctor ordered a heap of other tests along with physical, occupational and speech therapy. We are waiting on referrals and appointment confirmations, so we should finally have answers soon.

Since we found out about these problems, we have told friends and family, and though most are behind us and will support him no matter what, some are hesitant. We've heard "I'll pray for him" countless times. Its not a matter of religion, but it insinuates that he's broken and needs divine intervention to be "normal". This is one of the most horrible things anyone could ever say.

Caiden was born this way. Even if we could change him so that he was "normal" like everyone else, we wouldn't. Yes we want him to be able to speak to us and play with other kids, but whatever is "wrong" with him makes him who he is. If you were to take away his delay overnight, he wouldn't be Caiden in the morning.

We don't believe that a disability is the end of the world, its the beginning of an entirely new one.

Monday, May 26, 2014

"God is in the rain."

If you do an internet search for this quote (made popular by the movie V for Vendetta starring Natalie Portman and Hugo Weaving) one of the first things to pop up is that it means "challenge perfects the human soul."

I'm a true Aquarius. When it rains, if I can't make it outside to stand in it, I throw open every window, sit by the sill and watch it pour.

Today it is storming. In more ways than one. If challenge perfects the human soul the way a stone is shaped in a river or a canyon erroded by rain, then my soul should be damn close to perfection.

In honor of Memorial Day, here in the US, my husband had the day off from work. I got to sleep in and take a shower at 11am. My husband was going to nap while Caiden did, but Caiden had other plans. Neither one have napped yet today.

On days that hubby is home, I get Caiden out of his room and take him to sit on our bed to say hi to daddy after his nap. For whatever reason, Caiden didn't want to today and he was thrown into a meltdown.

His most severe one to date.

It lasted about 20 minutes, short as far as meltdowns go, but it was severe. Screaming, thrashing, choking for air, biting, and hitting. The whole shebang. I didn't think it would ever end. It was also the first meltdown of this magnitude that my husband had seen.

He's a great father, he and Caiden love each other to pieces and have an amazing bond. However, he struggles to grasp the difference between terrible twos behavior and autistic behavior, and it frustrates him. For this reason, along with being a stay at home mom, I manage the tantrums, and the meltdowns, and pretty much anything that could induce stress. And I'm happy to do so. I don't always know how to help Caiden, but I have more success than anyone else. He needs me to be there in those moments.

I guess my ability to get through stressors unflustered, is why I started graying just before I hit my 20s, when my grandmother didn't until her 60s.

It stopped raining about a half hour ago and while Caiden is still edgy, I feel calm. If only it could rain on each of his bad days, it would be easier to shake the exhaustion that follows them. There's something calming about watching how the raindrops fall.

We're currently watching his favorite Bubble Guppies dvd. Hell, we might watch the whole thing. Twice, if it means him staying calm. This will be our challenge today. And possibly tomorrow, and each day for the rest of our lives.

Caiden is shaping who we are. He is holding our hearts and he has the power to stomp on them, or hold them tight against his own. He will show us our breaking points, push us past them and force us to build new ones. He will be the rain that threatens to drown us, and the life jacket that saves us.

And when my time comes, if after all this, I don't have a perfect soul, I'm demanding a refund.

Friday, May 23, 2014

Unspoken Reality: Friday Recap

This week has been a particularly long week for Mr. Caiden, with Wednesday making him 23 months old. One more month and we can officially say goodbye to adjusted age (the age he should be if he were born term/on his due date). He will officially be a former preemie then, though still not caught up by the magical and highly anticipated two years.

Last weekend, he got a surprise visit from his Nana and two uncles. He had a great time while they were over, but as soon as they left it was meltdown central.. which continued throughout the beginning of the week. Transitioning for him, is a big deal. Its more than just him not wanting to do something, he struggles with changing his focus from one thing to another, regardless of what it is. Even diaper changes are hard because it means he has to stop what he's doing.

Usually, we just restrain and wait out the screaming. Its quicker than trying (and always failing) to calm him down, but sometimes its more than just screaming.

Caiden is aggressive.. and really thats just a nice way of saying he's prone to violent tendencies. You wouldn't know it if you saw him outside of the house though. Usually he relies on screaming when we're out, and keeps the violence for at home. One thing I'm thankful for in our hectic life.

Tuesday, one of his meltdowns got to the point where he actually managed to hurt me and drew blood. He had never gotten to that point before. And frankly, it scared me. My baby isn't even two years old yet, and he's able to do THAT to me? What are we going to have to deal with in the future? Is he going to break our bones, require us to get stitches? How much worse is his rage going to get?

I don't have the answers, I'm not sure I could face them if I did. All I know is that we need to get control over it as soon as possible.

Which is, of course, easier said than done.

Especially when we haven't been able to find a form of discipline that works for him. Until we do, I'm afraid the slapping, kicking, throwing and biting are going to continue. And we just have to cope with it. I feel bad that he can't just say whats on his mind. I'm sure if he could talk (he has fewer than 10 words), a lot of his aggression would subside.

Instead, we have to interpret babbling and whining for what he wants. Unfortunately for all of us, we're usually wrong. Its like planning to go to France on vacation, only to find out that your plane has landed in Japan. All the French phrases you learned, are useless.

Usually he just resorts to screaming.

At the end of the day, after a two hour battle to get him to take just a few bites of his dinner (most of which is thrown on the floor), we're all spent.

Today is Friday, and we're about an hour and a half away from nap time.  My usual perfect sleeper woke up early this morning and has been throwing things everywhere. Momma bear hasn't had more than a minute to sit down and I'm currently writing this while I cook us breakfast. But thats okay, because soon he'll get to watch Bubble Guppies, and for most of it will sit still for whats likely to be the only time today, just like everyday before.

And that's okay too, because it makes him happy. It keeps him calm with the rest of the world tuned out... and for 25 minutes, he doesn't have to scream. He doesnt have to hit. He doesn't have to bang his head. He doesn't have to throw anything. He doesn't have to focus on anything other than dancing mermaids and his cup of milk.

And wouldn't you know, for an angry toddler, and an already exhausted mommy, thats about as good as it gets.

Wednesday, May 7, 2014

The Hand You're Dealt

My husband is notorious for his amazing memory. He swears he can remember being as young as a toddler. While I have my doubts on that, he has proven that his memory is exceptional, with the ability to recall specific days down to what he was wearing. I, on the other hand, am not so lucky. I can hardly remember what I cooked for dinner last night, never mind specifics of my childhood.

I can recall a handful of nonspecific bits for each year I was in school. For example, in the 4th grade, I studied the Osprey for my final project. I remember it eats fish, and that I only picked it because someone took my other choices. What those choices were I have no idea.

I remember helping my best friend write a letter to her new teacher that same year. Her mom had died a few months earlier and she was moving to live with her dad in another state.

I remember in 8th grade, that I had my heart broken for the first time. I remember how my sister and her friends came to my rescue, in a way I didn't know I'd regret in five years.

I don't remember my first day of high school, but I remember getting lost in it a few days before, on an adventure with my closest friend, hoping to get an upper hand over the other freshmen.

I went to one of the largest schools in my home state. My graduating class had something like a thousand students, give or take. My sister was only two grades ahead of me, so I had the benefit of being escorted to classes by various upper classmen my first year. It was also because of my sister that I took a Sociology course my sophomore year, the teacher being one of her favorites.

He wasn't one of mine. Sociology just wasnt for me. It was however, for the brightest kid in class. I couldn't tell you his name to save my life, as I never talked to him. I do remember that he was a lefty, had brown curly hair, and was a grade or two ahead of me. I was insanely jealous and intrigued by his perfect grade, and his seemingly lack of effort to attain it. He just knew everything.

Now, my sister usually drove me home. She wasn't lucky enough to win a spot in the senior parking lot, so we walked to the track parking lot, across the street and down the road. One day, after my last period sociology class, I was surprised to see my mom waiting for me instead. My sister had gone home early and I didn't know to take the bus.

As we were pulling out of the parking lot, the boy in my sociology class was walking to his car. One of the strongest memories I have of my entire life, is what my mom said in regards to him that day.

"They let him drive?!" She had said as if she was tempted to call the police and report him.

See this boy, while shy in class and brilliant (honestly he was probably valedictorian of his class), had a limp. A very noticible and perhaps in some areas of his life, disabling limp. It was as if his knee wouldn't bend, and his leg was half an inch shorter than the other.

"They let him drive?!"

I'm ashamed to say that I don't remember if I ignored her, scoffed with her, or defended him, but those four little words would forever be ingrained in my mind.

I would briefly forget about them, but they would always come back. I suspect that if my mother had known how bad her health would get in the coming years, and how bad her limp would be, she probably would have kept her mouth shut at the boy I secretly admired, who didn't let his disability stop him from being like everyone else.

When Caiden was about a year old, and I suspected his delays to be caused by cerebral palsy, I found my thoughts back on that day. It occured to me that, I didn't know why that boy had that limp. I didn't know if maybe he too had been born early and that disability was a result of it. I found myself wondering what knowledge I could have gained had I befriended him. Would his friendship have prepared me for the drastic turn my life would take?

I was petrified that as Caiden grew my mother would scoff at him much the same way she did that day. I knew if that was my mother's reaction to that boy, certainly other parent's and their children, my classmates, scoffed at him too. Was that to be my son's fate as well? To receive disgusting stares, dirty remarks and constant ridicule?

I was quite honestly relieved when his doctor said it certainly wasn't cerebral palsy. And for a while, I fogot about that day.

Then after a lengthy conversation with my mother in law, it came back. Maybe it wasn't cerebral palsy, maybe it was autism. A disability more widely known and understood, and yet scoffed at just as much as a physical one such as a limp.

I worry that instead of being like the brilliant boy I hadn't really known, would he be one of those kids who everyone flocked too and was kind to, yet who would turn their backs and make cruel jokes about. I worry that even without the physical signs of his disability, he will be scoffed at behind his back, that he will be thought less of because of the disability label. That he will be called things like; different, broken, undesirable, abnormal, strange, weird. Will he even comprehend those things?

To the boy in my high school sociology class; I'm sorry for what my mother said, and for what others have likely said. Also, for not openly defending you. I'm sure you're in college now, or doing something as brilliant as you are. I want to let you know that even though we never spoke, and I can't recall your name, you made an impact on my life. You showed me that even with a disability, a person can be great and offer something truly unique to those around them. While I'm sure my mother in her ignorance, would stand by her comment, I applaud you for overcoming those barriers and showing the world that you don't have to accept the hand you're dealt.

Whether my son will grow up to understand any of this, is still a future that is hidden from me. If he is one of those people who gets scoffed at, I will be the first and the loudest voice to defend him. And if he grows up a "normal" kid, I hope he will lend his voice to others. That he will understand and appreciate that being a little different; walking a little skewed, talking a little bit slower, or clapping a little fast, isn't a bad thing. Its what defines us from everyone else and makes us the individuals that we are.

Thursday, May 1, 2014

Shifting Focus

When Caiden was born nine weeks premature due to my developing a rare condition called HELLP Syndrome, we were thrown into a world we didn't understand. For months I obsessed over the ounces he gained, the milestones he approached, and attempted to rationalize what had happened to us. Over the course of my week on the L&D floor, and Caiden's month in the NICU, his future seemed to blur, only gaining clarity as he approached his first birthday and our lives beginning to return to normal.

However, preoccupied by a drive to get others to understand not only his prematurity, but my own dance with death, we failed to notice the signs pointing us in a different direction.

When Caiden wasn't walking by his first birthday and was weak on one side of his body, I strongly suspected he had cerebral palsy. I had seen countless other preemies diagnosed with it, and from what I was seeing, I thought that had to be it. I felt like one of those parents who thinks their child has some rare, practically unheard of issue that Dr.Google told them about. I knew something was different about him, but it wasn't cerebral palsy.

Trying to ignore the gut feeling I had, more than six months after his birthday, we were shocked into a realization. He's got autism.

Having seen him interact with his cousin, just a few months older, it was apparent he wasn't a normal kid. He chose to play by himself, got mad at the tiniest things, and threw temper tantrums that put all other kids to shame. He hurt himself and others, finding it and all forms of discipline we tried, hilarious. The key, was that he barely talks and forgets the words he does pick up.

A friend mentioned the similarities between her autistic son, and Caiden, so I did some digging. Nearly every website that listed warning signs for an autism spectrum disorder, described him to a T. The outbursts, repetitive motions, lack of communication skills... everything fit.

So we made the call.

June 18th, just three days before Caiden's second birthday, we take him to be evaluated by a developmental pediatrician. At this point, we're fairly certain it is autism. We were told to expect it. At the very least, he is severely speech delayed and will need therapy for that, but will most likely go beyond.

Since discovering that he may fall on the spectrum, my focus has shifted. Prematurity awareness will always hold a special place in my heart, but a year or so after over coming it, the impact it has over your life fades. It was a scary experience, for the first few months, the first year even, but we got past it. Autism, is every single day.

Caiden has been different since he was born at a meager three and a half pounds. Now we begin our journey to discover just how different he may be. Whether he has autism, or some other "issue", he is our son, and we love him regardless of the diagnosis handed down. Some days will be difficult, some will be amazing, but each will be as unique as he is.