Autism - Part 3

I'd like to say that I walked out of that office like a mother tiger ready to fight for her cub to the death, but that's not what happened. I had to grieve first...grieve for the life that my little boy wasn't going to get. Grieve for the lives that my husband and I would now have.

I walked out totally and competely numb. In fact, the days that followed are somewhat of a blur. I went to work, I went home, I might have eaten, I might have slept. I mostly just shut down. In retrospect, I'm sure this was my psyche defending me against a complete mental breakdown. I literally could not handle it the first few days. I looked at my son blankly for those days, at a complete loss for even the first clue as to where to begin.

I remember going to work and being like a zombie. People were asking me questions about data and QA stuff...were they kidding? I wanted to scream, "WHO CARES?! The world is falling apart, and you're asking me about a signal-to-noise ratio??" I don't even know if I responded to those questions that, in those moments, struck me as completely asenine. I vaguely remember sitting in my office, feeling a wet substance coming from my eyes but not being all together sure what was going on. Like I said, I'm really not sure what I did or didn't do in those first several days. It scares me to think that I was ever THAT checked out of life, but I think I had to do that in order to stay together enough in the long run to be effective in the many battles that were yet to come.

I moved from the initial "denial" phase of my grief into "anger" sometime within a week of that appointment. I was livid, and that anger was, initially, very specific. I hated God. If there was a benevolent god, how could he have let this happen? Even if this were some kind of punishment for me and/or my husband, why did he have to bring my precious baby into it? What kind of a being would DO this to a child?? If that's god, then I want no part of him. None. Mostly, though, that's when I began to entertain the idea that there was no god.

And if there WAS no god, then I needed to find another person to blame. How could science not be advanced enough to have no cure or even proven treatment for this? No, I can't be mad at lack of technological advancement. Too obscure and non-specific. How could insurance companies not pay for the treatment that WAS available (more on that next time)? Upsetting and disappointing, yes, but not really a CAUSE of the issue. What was the CAUSE? The scientist in me was horrified that doctors really didn't know. However, based on the fact that my nephew also had it, there was a logical conclusion to draw. The cause was ME. MY genes. Who I fundamentally am. I had acted as a carrier for this disorder, and now my son would pay for this for the rest of his life. Now my anger was focused on myself. Scott and I had tried to get pregnant for 18 months before Sammy was conceived...maybe that was a sign that we just shouldn't be having kids. Why was I so selfish? This was my fault. OMG...is that how Scott saw it, too? That his son would have lifelong struggles simply because he had the misfortune of having me as a mother? Would I lose them both? I wanted to die. Literally.

I suppose that made the "bargaining" phase a bit easier. Although I still wasn't all together sure that there was a god, I began the bargaining process. "If you would just save my son from this - make him normal - I would gladly die for it." "If you would just help Sammy get through this, you can have whatever you want. I'll preach for you. I'll sing your praises. Please." "If you would just make Sammy OK, then you can send my soul into eternal damnation. He's all that matters to me. Please." Countless similar pleas were made, none of which helped. I felt pretty foolish...I mean, if there was a god, he obviously didn't care about me or my family at all, so why would he help now?...but it was like I had to try.

The "depression" phase that came after this hit like a ton of bricks. As I said, I blamed myself anyway. With the realization that no supreme being was going to give me a "do over" and allow me to awaken from this nightmare, I was unbelievably heartbroken. I really just wanted this to not be true, but it was. It was the saddest period of my life to date. Knowing that your baby will struggle for every little accomplishment is almost too much to bear. Almost.

I couldn't let the depression take over, not now, when my little boy needed me to fight for him. I got on the appropriate medications and was finally able to deal with the challenges that were coming. I had reached "acceptance."

What people don't often tell you about autism is that you go through this cycle of grieving repeatedly. For me, each time I go through this, the "acceptance" comes sooner, as there's no use in wallowing in your own grief, and yet, I know that another cycle is coming sooner or later. Eventually, this situation will anger me beyond belief, I will beg for a way out, I won't get it, and then I'll come back to accepting it. To see what you are grieving every day is a very strange phenomenon. You can't choose to shelve what you see every day.

So now I was ready to fight. Fight for my family and my son. I had no idea how hard the days, months, and years to come would be, but I was about to find out.

Autism - Part 2

On August 26, 2003, I brought my new baby boy home. He had fallen asleep on the drive to our house, so I popped out his little carseat, carried it in, and set him down on the coffee table in our living room. I just stared at him for a few minutes, then I turned to my husband and said, "I can't believe we made this. He's just perfect." Of course, I knew he wasn't perfect in the biblical sense, but he was everything I had ever wanted, all my dreams, packaged up in 7 lbs, 15 oz of sweet innocence. I knew that I could never love anyone more than I loved that beautiful little boy, and I would do everything in my power to keep him safe.

For the next year, Scott and I hung on his every movement. We'd call each other at work when he'd roll over. Or smile. Or giggle. You name it, we were relishing the moment. Watching his progress was simply amazing.

Around 15 months, he started doing something that was, well, unusual. He would spend several minutes pacing in circles. What an odd kid, we thought, but he laughed and laughed, so we laughed, too. He was enjoying this, for some reason, but a happy kid made for a happy mom and dad.

Meanwhile, his cousin had been having some serious developmental delays. We weren't sure exactly what was going on, but we knew what wasn't. He was approaching age 3, and he still wasn't speaking. Right around this time, Will was diagnosed with autism. I remember being a little confused about this from the beginning. My only experience with autism was from the movie "Rainman," and Will was nothing like him. I started reading more about autism, and suddenly, a light bulb went off. Sammy wasn't speaking yet, either. He also had a lot of bizarre repetitive behaviors. He didn't want to play with us anymore, really. Oh, God. Please no.

I could barely squeak out the words when I brought it up to Scott. He thought I was overreacting. Kids develop at their own pace, he said. If he's still showing these signs in a couple of months at his check-up, we'll talk with his pediatrician. That sounded reasonable. I was probably worried about nothing, internalizing the struggles that I had read about and that I knew was affecting my brother, his wife, and their son. Yes, it's probably my imagination.

I took Sammy to his 18-month check-up. While he'd missed a speaking milestone at his 15-month appointment, he had missed almost all of them at this one. I had a talk with his doctor, who told me that we could get him in for an autism evaluation now, or we could wait and see and worry for the next 6 months, when we could have this same conversation if things weren't improving. Set it up, I said. If this is what he had, all of the literature I had read said that early intervention was key, and it doesn't get much earlier than 18 months.

At 20 months, he had his initial evaluation. He was given a "provisional diagnosis" of autism, which was because he was so young that they wouldn't give an "official" diagnosis. Being naive to Ohio law, I thought this was crazy, that he needed services for early intervention, and for that, he'd need a diagnosis. We spent the next several months having evaluations from all kinds of specialists. Just before he turned 2, I took him to Children's Hospital in Columbus for the "official" diagnosis. I remember walking into the specialist's office. This guy...he'd know what I should do. I had hoped he'd tell me that Sammy was delayed, but that he'd grow out of it. Nothing to worry about. I didn't believe that's what he WOULD say, I had just been hoping. The kind of hope that you know is unfounded - like hoping you'll win the lotto. There's an outside chance that I (and the team who had given him the provisional diagnosis) were wrong. What he said was actually worse than I had imagined. He told me that Sammy did indeed have autism. He went on to say that he had tested in the range of moderate retardation, and if I didn't get him into therapy right away, 40 hrs/week, that he'd likely never progress. "Moderate retardation." My son, my beautiful, innocent baby boy, was retarded. It is this incident, my friends, that I recall when I hear the word retarded. The absolute worst moment of my life. The moment when I knew this wasn't going to go away. My child had autism.

Autism - Part 1

I remember a time when I used to be so annoyed at those people in the grocery store who just could not seem to control their kids. I mean, how hard could it be to get your kid to stop screaming because he isn't allowed to get candy?! Man, that is one spoiled kid, and that is one lazy mom. If she'd have put just a little work into it, she could at least get the kid to stop screaming. Wait...now the kid - must be 7 or 8 years old - has thrown himself on the floor and having a full blown tantrum. What the hell, lady?!?! Control your kid!!

To every parent that I gave that look of "you are the worst parent ever," I am truly and deeply sorry.

You see, those times are long gone, mostly because now I'M the lady with the kid kicking and screaming in the middle of the store. I'M the lady trying to hold back my tears (often unsuccessfully) as my autistic child has a meltdown because I just had to run into the store to grab something for dinner, and he just can't handle it. I have no idea WHY he's screaming, really...he just doesn't want to be HERE. Now I'M the one trying to calm him down enough so I can get the hell out of here. I'M the one trying to ignore the stares and looks of utter disgust.

We try to avoid taking Sammy indoors pretty much anywhere except for school and the doctor's office. It's too much of a question mark. He could be good as gold; he could behave like a demon-possessed child. It's really about 50/50. Those odds don't encourage us to take him out too much. But every once in a while, it can't be avoided. Since he is also a "runner" (a child who will take off full speed anywhere at any given moment), I usually tie him to me when we go out. For those of you without a special needs child, this may seem extreme, even cruel. I remember, during those good old trips to the store, being utterly appalled when I would see a parent with a kid basically leashed. Your kid isn't a dog, lady! But after having had Sammy dart out into traffic full speed onto a busy highway (yes, that actually happened), I don't care anymore about those looks. I know he HAS to be tied to me for his own safety.

I've decided to pick up blogging again to share my own experiences with autism. I'm in no position to explain the clinical aspects of autism. I'm sure the many autism awareness websites can do a much better job of that. Instead, I've decided to write about how autism FEELS when it affects your life in a very personal way - from when you suspect that something is "off" with your child, through diagnosis, then the events that follow. Some days I feel like this WILL get better - I will MAKE it get better; other days I feel like driving off a cliff. I hope to chronicle all of this, if for no reason other than to come to terms with all of this for myself. I welcome you to come along on the journey with me. I will caution you now...you'll probably want to grab your tissues more often than not, but that's the nature of this disorder. Lots of tears with the occasional ray of sunshine, but that's my reality. And maybe, if you choose to follow these next several posts, you'll gain a little more insight as to who I am and, much more importantly, how autism affects not only the person who has this disorder, but also everyone who loves that person.

Maybe next time you see that screaming child on the grocery store floor, you'll look at that mom with a little more compassion. Maybe you'll even offer her a few words of encouragement. That little gesture from a stranger has saved me from myself more than once.

Walking on the same path

On February 14, 1997, my best friend asked me to marry him. Thirteen years ago today, I did just that.



It hasn't always been easy. If I'm being honest, a lot of it has been very challenging. There were little things that came up along the way, and then we experienced autism. Autism is something I knew nothing about 10 years ago besides what I saw on "Rainman," and now it's become an integral part of our lives. Anyway, I know so many people who paint their marriages as lands of rainbows and lollipops, and let me tell you, I'm not overly familiar with this fantasyland. Successful marriages require compromises or constant agreement. Scott and I are both opinionated, and often have opposing opinions. Compromising can be challenging for both of us. Maybe if either of us was more easy-going, we'd at least visit that fantasy rainbow and lollipop land more often, but that's not who we are.



Who we actually are serves us better, which is how we've survived and even thrived for 13 years together. Our secret to a successful marriage is an understanding that even when we disagree, we are coming from the same place. We realize that we both ultimately want the same things: children who are happy and well-adjusted, financial security, identities beyond the four walls of our home, and so many other things. And when we disagree, it's because we see different paths to achieving those objectives. When I keep that in mind, although he might want to do the exact opposite action that I want to do, it reminds me of why we fit so well together. He's walking on the same path as me. And this realization has allowed us to learn the art of compromise.



60 years from now, when I reach the end of the path, I hope to look to my side, see my husband, and say, "It was all worth it. Sometimes you were right, sometimes I was right, sometimes neither of us was right, but in the end, just knowing that you were on this path with me made the journey worthwhile."



Happy Anniversary, Scott. I love you, and there is no one I'd rather have by my side as we continue our journey down this path, now and forever.

When feelings trump logic

I got some news today that affected me in a big way, but the weird thing is, while I'm sure my reaction isn't altogether uncommon, I find that I'm mostly unpleasantly surprised at myself. Logic and feelings just aren't aligning, and for today, feelings are just playing the trump card. Here's what happened...

As all of you who read this blog already know, my older son, Sammy, was diagnosed long ago with autism. Every day, I watch him struggle to communicate his most basic needs since he is essentially non-verbal. So it hit me like a ton of bricks today that my younger son, Zak, is also on the spectrum, diagnosed with Asperger's Syndrome. The few people to whom I've spoken about this tell me that 1) it's not so bad, as Zak is able to do so many things that are actually well above his chronological age and 2) he's exactly the same person he was yesterday, but now we have the right label to give it so we can go about getting him the assistance that will help him to live a full life. Now this all seems logical. It really does. But that's not how I feel today.

I FEEL heartbroken...like the absolute most difficult challenge that I have ever had to face with Sammy is on the cusp of repeating itself. I know that the nature of the challenges will be different, but they will still be almost tangible. The biggest difference is that I can't SHOW how I feel this time in my own home. Zak is too aware, so I must stifle the tears.

I FEEL guilty...it was my DNA that likely brought the autism spectrum to the table. My choice to have a second child, even knowing the odds, makes me feel like the absolute most selfish person in the world. Imagine loving someone so much that you would literally do anything to prevent them from feeling pain, then to know that YOU, however unintentionally, were actually the CAUSE of their lifelong struggle...how do you live with this knowledge? And now I've done it twice.

I FEEL angry...I find myself outraged that this has happened again. Mad at myself, to be sure, but mad at the universe, mostly. If there is anyone looking out for us, then I'm going to have some things to say when I die, and it will be along the lines of "Do you enjoy inflicting crushing agony on people?" Good thing, then, that this pretty much seals the deal of any belief that I once had that an omnipotent being cares for us. I wouldn't expose my worst enemies to this kind of pain, so I find it impossible to reconcile this situation with a world in which there is a God who actively cares about us. (BTW, I know people will want to tell me that God has a plan and this plays into it...don't waste your breath...I'm allowed to be pissed about this.)

But what really gets me is that how I should feel, based on the logic that has been my guiding light for as long as I remember, is so incongruent with how I DO feel. I SHOULD simply accept the logic that my close friends and family have so sanely imparted upon me today, but that's so far off from how I feel, I can barely recognize that they are right. I hope that tomorrow I will go back to being guided by logic, but for today, I will, for the second time in my life, grieve something that no parent should have to even once, let alone twice.

Taking a mulligan

Mulligan: a free shot sometimes given a golfer in informal play when the previous shot was poorly played

I am ordinarily a very positive person. I'm the one that, when my friends tell me their stories, I always can make them feel better by pointing out that it's not that bad, at least they have x, y, and z going for them. Generally, I can find something positive in a craptacular situation.


And then there was the month of May.


So far this month, I've had three major fights with people I love, my washing machine broke, we got a flat tire (on the way home from the Laundromat) and the tow truck didn't show, ants have become permanent residents in my house, and our dishwasher broke. I'm pretty sure that my rooting for the Cavs played a part in their untimely loss in the playoffs (sorry, Cavs fans). Work has been "interesting." And we still have 10 more days to go. I told a friend yesterday that my new "at least" statement was going to be, "At least it isn't like May 2010."


I don't know if there is a precedent for it, but I've decided to take a full-blown mulligan for the entire month of May. On June 1, I'm waking up and shaking it all off. Here's to hoping that June goes better than this tumultuous month. I'm pretty sure that it has to.

Underestimating "The Sensitivity Factor"

Sometimes, it's hard to know when you've gone too far. This is especially true for me, as my biggest (and certainly self-recognized) flaw is a lack of sensitivity. I've been working on this for literally years, but unfortunately, sensitivity doesn't operate using an on/off switch. It is spectral in nature, and while I may no longer be sitting at the very end of the spectrum, I am certainly still much closer to the end where I'd rather not be.



I recently posted something that was very offensive to someone I care about very much...like a sister. While I intended the subject to be thought-provoking and to provide a different perspective, I crossed a line. I didn't intend to do so, by any means, and was honest to God very surprised by the reaction it solicited.



Then I remembered the whole sensitivity challenge that I have, and it all came together.



The Golden Rule is a very powerful statement. The problem that I have is that, while I consider the thoughts/feelings of others before I act, I am literally doing unto others as I would have done to me, and with an inherent lack of sensitivity, this sets the bar for me at an inappropriate level. Just because I wouldn't be hurt by something if the tables were turned doesn't mean that someone else that is on another, more centrist position on the sensitivity spectrum would not be.



I'll continue to work on this unattractive personality trait, probably for the rest of my life. As an (albeit late) step in the right direction, you will notice that the two passionate posts I have written thus far are no longer available on this blog. I may never be able to reach my goal of being a centrist on sensitivity, but I most certainly won't come even close if I don't begin to walk in that direction in the first place. It's going to be a long journey for me, and I hope you all will be patient with me as I travel.

But in the meantime, I'll simply say this: I'm sorry, Kate.