On the Outside Looking In . . .

For most of my life, I've felt like I was on the outside looking in; like I've never quite fit in anywhere. In school, especially high school, there were times when I was most definitely on the outside. Don't get me wrong, I had a great group of friends, but I wasn't always included in activities. It was my own fault though. I wasn't exactly a saint. In fact, if you ask most of the people I went to school with, I was considered quite the witch with a "B". Unfortunately, a lot of people had a one sided view of things. I had dated a boy for a little over a year and we broke up and got back together several times within that time frame. Having my heart broken repeatedly didn't exactly improve my attitude, and given the fact that I'm a redhead, I already had a proclivity for being "sassy." I became even more "sassy" with each breakup and I eventually ended up alienating people. In addition to that, I was a bit too serious for a junior in high school. I was completely focused on college and my future, when instead I should have been living in the moment.

Things didn't improve much in college since I was still too serious for my own good. I was also still more focused on the future than on the present. Thankfully, I had an awesome boyfriend who I had met mid-way through my junior year in high school. We wound up going to college together and, he too, was kind of an outsider. We had some great friends who accepted us for who we were, even though we didn't drink like most college kids. We got engaged our junior year in college despite having very little support from friends and family. Most people thought we were too young and we heard many times that we would never make it; that high school sweethearts rarely last. We most definitely weren't the norm.

We got married a few months after graduation and about six months later my mother passed away due to heart disease. She and I were very close and her death was unexpected. I had a very hard time dealing with my grief and as a result I distanced myself somewhat from friends and family. A few months later, my husband joined the military. Once again I found myself in the position of outsider. I've never had an easy time making friends and I was thousands of miles away from my friends and family and the only home I had ever known. I truly felt out of my element and I didn't exactly excel in my roll as an officer's wife. Thankfully, I got a teaching position and was able to make a few good friends at work.

About six months or so after getting settled, we decided it was time to go see a doctor as we had been trying to start a family for almost a year with no success. After undergoing several tests, it was determined that we would not be able to conceive without medical intervention. Yet again, I felt like I was on the outside looking in. All of my friends and family were able to have babies without any trouble. I was beginning to get extremely frustrated with my lot in life. We underwent fertility treatments off an on over the next several years (amidst yet another move due to the military) and finally seven years later we conceived with the help of IVF. For once, I felt like I was "normal" and finally on the inside. After struggling for so long to get pregnant, I was under the impression that I had done my time and would be rewarded with a happy and healthy nine months. Sadly, I was mistaken.

Just before my husband deployed to Iraq for the second time, we found out that we were expecting twins. I had always wanted twins, a boy and a girl. The first seven weeks of my pregnancy were completely normal; however, during my eighth week I had a threatened miscarriage. Thankfully, with some bed rest and careful monitoring, I was able to continue carrying my precious cargo for a while longer. At nineteen weeks though I found myself on bed rest once again, this time in the hospital. I was very close to losing one or both of our babies and I had to basically lay upside down for a few weeks while on meds to halt my contractions. I was only able to keep our babies safe for another five weeks before they had to be delivered via emergency c-section. I wasn't able to hold or even touch my babies because they were so sick and fragile. They had multiple complications from being born too early and underwent over a dozen surgeries between them. After three months of fighting for her life, our precious baby girl just couldn't fight anymore. We were able to hold her for the first and last time as she took her final breath.

Over the next couple of weeks, as I watched a few of the other parents taking their twins home from the NICU, I became extremely bitter. I didn't understand why we had to fight so hard to have a baby only to have one of our precious little ones taken away from us and to continue to watch our remaining child fight to survive. At this point, I was sick of being on the outside looking in; I just wanted to be normal like everyone else.

After four and a half long months, we were finally able to bring our little miracle man home. Like most parents, we were filled with hopes and dreams for his future; however, we knew that there might be some obstacles to overcome. Our little man had suffered a grade IV brain bleed while only a few days old. We had been cautioned by the doctors in the NICU that the effects of the brain bleed wouldn't be revealed until he reached school age. We remained optimistic that all would turn out fine in the long run. We cherished every day we spent with him and relished in the opportunity to watch him grow. Despite the uncertainty for the future, never in our wildest dreams did we imagine what was in store for our sweet little man. We were thrown for a loop when he started showing signs of autism and even more so about a year and a half later when we got the official diagnosis. Yet again, it was like we were on the outside looking in; only this time we had taken our son with us.

Raising a child who is on the spectrum is quite different than raising a neurotypical child. There are so many experiences that we can't give him or activities that we can't do with him for one reason or another. Simple things that other parents take for granted, like playing catch or going to the movies, are complicated due to our son's sensory issues as well as his delayed development. We do our best to give him as many experiences as possible though and we are determined to make sure he leads as full of a life as possible. While he may not ever be on the "inside" I think he's perfect just the way he is and I wouldn't trade him for all the neurotypical children in the world!!!

Some days I still struggle with feeling like an outsider but then I look at the gifts God has given me by allowing me to be different, and I'm grateful. Being different has made me the woman I am today. It has forced me to dig deep and find strength I didn't know I possessed. In retrospect, I would much rather be on the outside looking in than "normal" like everyone else.

The Big "A" Word

Most of the people who read the title of this blog post will assume I'm referring to a cuss word. I assure you I'm not; however, I'd be willing to bet that for some parents who encounter the big "A" word, it might as well be one.

Autism. It's one of those words parents fear the most. Parents of children with autism often see the signs early on, but it still may come as a shock when their child is officially diagnosed. My husband and I started questioning our son's behaviors as early as 15 months, but we were still quite overwhelmed when we got the official diagnosis a little more than 2 years later. While Mason doesn't have classic autism, he is still on the spectrum. His official diagnosis is PDD-NOS, or Pervasive Developmental Disorder - Not Otherwise Specified.

We knew that Mason would most likely face obstacles due to his extreme prematurity and subsequent grade IV brain bleed, but we never considered autism until we started seeing some early signs. I even questioned his pediatrician at his 12-month well baby check (which was delayed a few months due to a military move) but she brushed off my concerns even after she admitted some of his behaviors were early indicators of autism. We remained vigilant though and got Mason into the school district's Early Intervention Program as well as medically based OT and Speech (he had been receiving medically based PT since coming home from the NICU). Although the Speech therapist saw the signs right away, it took the school personnel about 6 months to identify enough behaviors to be considered red flags. After we switched pediatricians, we were able to get a referral for the Autism Spectrum Disorders clinic and subsequently a
formal diagnosis.

Most people who encounter Mason say that they wouldn't know he was on the spectrum if we didn't tell them. These people typically only spend a few minutes with our son though. While he is not severely affected, he is still, in fact, autistic. That's why it's called an autism spectrum disorder. Children can fall anywhere within the spectrum. Just because a child is at the higher end of the spectrum, it doesn't make them any less autistic. Also, autism isn't something that can be outgrown. Our son will have to overcome obstacles for the rest of his life.

Mason's development has been all over the map since birth which was no surprise but, in addition to that, he struggles with communication and socialization. He doesn't know how to express his needs or wants and the majority of his speech consists of quoting phrases he's heard or whole scenes from television shows or movies. My husband and I have always had a hard time playing with Mason because he doesn't play like a typical developing child. He's also had a hard time connecting with peers. He's made a great deal of progress since starting ABA therapy but there's still a long road ahead.

We love our son unconditionally and wouldn't change him for the world, but that doesn't mean our hearts don't break for him on a daily basis. We want so much more for him!! It's hard sometimes to contemplate the future because we have no idea what's in store. We are cautiously optimistic that because we sought early intervention, someday Mason will be able to lead a "normal" life but there are no guarantees.

Autism has robbed Mason of so many experiences and it will most likely continue to do so; however, it has also taught my husband and I a great deal about ourselves and the world. We are going to continue to advocate for our son as well as others in the autistic community. Unfortunately, many people have misconceptions of what autism looks like and they make assumptions due to those misconceptions. I can only hope that by sharing our story, I can help spread awareness of this disorder.