Therapy

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.

Gofundme.com/a-car-for-caiden

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.

"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.

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.

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.

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.