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!

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.