Huge April Update!

As Autism Awareness month winds down, I figured now would be a good time to give a little update on Caiden, especially since we have some BIG news to share!

Caiden has made leaps and bounds in his development lately. He has almost met all of his short term goals for OT, such as drawing a circle and straight-ish lines. He has also been showing more signs of sensory seeking instead of avoiding. In PT, he has finally mastered catching a ball, and jumping, managing to get both feet clear off the floor! He is very proud of himself for this, as he should be ;) However, it is ST that he has shown the most progress in recently. Caiden now has more than FIFTY - yes, fifty! - words he can say!! These include "mommy" and "daddy" which he had not said in roughly a year!

While we are extremely excited about how much he's improved lately, we are still keeping a close eye on him. He is prone to regressions, so we're hoping that a lot of his new skills stick around for a while this time.

The developmental pedi gave me some paperwork on IEPs so we can get him enrolled in school this fall. He's going to need a one-on-one aide and still isn't potty trained, so we've got a lot of work ahead of us. I personally think he's going to have a rough few days once he first starts trying to get used to it, but I think after that, he's going to love being in school.

Because Caiden has done so well lately and is showing so much progress, the doctor decided that he doesn't need to go back to see her for a whole entire YEAR!! She still wants us to keep her updated and to go in if something comes up, but as long as he continues to do well, we only have to see her once a year.

Today he weighed in at roughly 45lbs (97th percentile) and is 3'7" (99th percentile) and........ he let them take his blood pressure!! Caiden has only tolerated having it taken ONE other time, and today he didn't really care, just got kinda wiggly. It was a perfect 100/60 too!

Our next big date is in just two weeks when we go back to neurogenetics and meet the new neurologist to go over his last MRI. Hopefully we'll continue to get good news!

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.

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.

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.