Que Sera, Sera.

With all the frustrating trials and unbelievable challenges we face in raising Ethan every day, it’s no wonder that my thoughts are literally consumed by my firstborn son.

What does surprise me, though, is how much I worry about his little brother. Alex, so far, is not only apparently “normally-developing,” but seems to be the complete reverse of Ethan; where Ethan was late on everything as a baby, Alex is early. He rolled completely over at 2 months, sat up at 4 months, stood up at 5.5 months. At 7 months he was crab-walking while holding onto the furniture, and by 8 months he was toddling around the living room, completely unassisted. Crawling happened somewhere in there, too, but didn’t last long once he figured out he could just get up and run wherever he wanted! He’s been babbling and saying simple words (mama, dada, baba, yum yum, bubble, bye-bye) for quite a few months now. He’s  11 months and 6 days old as of today.

Alex does so many things that Ethan never did as a baby. Alex reaches out to us to be picked up. Ethan never did that. Alex already blows kisses, gives us kisses, he hugs us, for God’s sake! Ethan is 4 years old. He literally just started giving us proper hugs within the last 6 months.

Alex dances. Like, actually dances to music. He laughs and jokes with us. He mimics our movements and tries to repeat words back to us. He loves to be held. He even breastfeeds better than Ethan did as a baby. At 11 months, I’m worried about how I’m going to wean him once his first birthday comes around. I was barely able to get Ethan to breastfeed for 2 months. It was very stressful for both of us, and a feeding usually ended with us both crying and me begging my husband to just give him a bottle of formula so he would go to sleep.

The last couple of weeks, we’ve noticed that Alex has learned how to spin in circles. He doesn’t do it for extended periods of time; in fact, he doesn’t even seem to do it long enough to let himself get dizzy. But I was actually concerned enough to Google it, and apparently it’s perfectly normal for babies his age to do that. But let me tell you, the first time I saw him do it, I felt sick to my stomach. I had a moment of sheer panic. I still find myself checking every day to make sure he’s making eye contact with me, testing him out to see if he’s losing any of his words or regressing at all. When I see him crawling somewhere instead of walking (which he almost never does, unless we’re in an unfamiliar place), I catch myself rushing over and hauling him up to his feet… and why? I guess maybe I’m reminding him that he can walk, I don’t know.

We also have some serious reservations about letting Alex cry it out, because we used the Baby-Wise Method with Ethan to get him to sleep through the night when he was a baby. It worked, he slept through the night by the time he was 8 weeks old, but it was tough. The Baby-Wise Method is all about teaching your baby to self-soothe and involves extensive crying it out. There have also been some reports (though admittedly all of them are unfounded) that there may be some correlation between the Baby-Wise Method and autism. So I’m sure you can see why this is a method I haven’t been entirely on board with where our second child is concerned. We’ve tried, and the effort usually culminated in my husband or myself rushing in to pick Alex up and cuddle him after approximately 12 seconds. We always give up and rock him to sleep. We just can't bear the thought of the alternative.

I recently read an article that said parents of children with ASD (Autism Spectrum Disorder) have roughly a 5% chance of having another child with ASD. It also said that the chances of having a second child that does not have ASD is over 90% and that having one child with ASD should not affect the couple’s decision to have another child.

So why do my husband and I agonize over this very decision? We can’t seem to decide whether or not we want to have another baby. We go back and forth almost daily. Why do I check Alex out every day to make sure he’s still developing normally and that he’s not showing any signs of autism, signs of regression, signs of… well, becoming like Ethan? Because I’m so afraid of it, this mysterious…being…that is Autism. I have nightmares about it. I have dreams of walking into a room and seeing my precious babies’ faces disappearing. One minute they’re smiling at me, laughing, talking, and the next minute, they have no faces. No expression. No voices. They’re nothing. And they’re sitting in the room with me, but I’m alone.

I’m pretty sure that’s straight out of an episode of “The Twilight Zone.” How original.

I guess the only thing I can do is listen to that old song (I happen to prefer Doris Day’s rendition), Que Sera, Sera, and realize that the most important thing to remember is that “Whatever Will Be, Will Be.” 

Autism: The Scarlet Letter

“Autism” is a word that I never thought would become part of my everyday vocabulary. But here I am, using it at least once a day. Bare minimum. I’m okay with that. I can say it. Autism! See?

The frustrations that come along with it are something else entirely, though. 

When Ethan was diagnosed a few weeks ago, the doctor we saw told me that it’s not just the child that receives the diagnosis; it’s the whole family. Oh, how right he was. Autism, whether we like to think so or not, carries with it a stigma. There are times lately when I feel like I’m wearing the Scarlet Letter on my chest – a big red “A” for all the world to see – only my “A” doesn’t stand for “Adultery.” It stands for “Autism.” Ethan’s behaviors are changing, as is typical of autistic characteristics. You see the most drastic changes before the age of five. Well, we’re sure seeing them now! He’s still very verbal, which is good. In fact, he’s more verbal now than ever...enough so that there are times when I find myself wishing he would be quiet, just for five precious minutes…although his speech pattern is very robotic and monotone in nature, he still mixes up his pronouns, and still very rarely makes appropriate responses to questions. One thing he has shown a lot of improvement on is making eye contact, which is absolutely wonderful! But we’re seeing a lot of “stimming” now, more than ever. That’s a term that’s short for self-stimulatory behavior; autistic people tend to stim to help themselves manage negative emotions, things like fear, anxiety, anger, and sadness, or sometimes to help themselves cope with overwhelming sensory input (too much noise, bright light, being too hot, etc.). Stimming can manifest itself as things like hand flapping, spinning, making repetitive noises or repeating certain words or phrases over and over…and over…and over…again. Relentlessly, sometimes. But don’t let yourself be fooled – stimming is a part of most people’s behavior patterns! Do you bite your nails? Wiggle your foot back and forth while sitting with your legs crossed? Pace the floor? Blink excessively? Maybe you have a nervous twitch? If you do these things or any other repetitive behaviors, you’ve stimmed, too!

The most notable differences in typical and autistic stimming, though, are the choice or medium of stimming, and how much of it there is. For whatever reason, an autistic kid spinning and flapping their hands is looked down upon, while nail biting (something  that, quite frankly, makes my skin crawl) is perfectly tolerated and acceptable. Now, Ethan is not a “hand-flapper,” and he’s not even really a “spinner” anymore. His number one stim right now is saying “Hi, Mommy!” at least 50 times a day. And if I don’t say “Hi, Ethan!” right back, he gets distressed and can move towards a meltdown quicker than you could say “Jack Robinson!” He also occasionally does things like making a repetitive clicking noise in the back of his throat, mimicking sounds like a door he hears snick shut, and the absolute worst is when he echoes his 10-month-old brother, whether it be cooing, crying, laughing, shrieking, you name it. Quite frankly, it drives me nuts! And no, I don’t feel guilty at all saying that – it’s perfectly normal for my child’s stims to drive me to my breaking point.

Now, I’m here to tell you something, people. I love my son with all my heart. I do. But Autism is a bitter, bitter pill to swallow. It has isolated us from everything and everyone we know and love. Never before have I been in a room full of people at a party, or in a crowded super market, or even in the living room relaxing with my own family, and felt so completely and utterly alone. Friends and family reach out to us (though a good number have simply abandoned us – it’s a cold, hard fact, but a fact, nonetheless), but the truth is that I always feel like I’m on the outside looking in now. I see friends posting on Facebook about how eager they are for their kids’ summer vacations to start, because they have all these plans and are looking forward to spending so much time with their children! They’re excited, literally counting down the days. I’m the exact opposite: I am positively dreading Ethan being out of school for the summer. I know he won’t handle the transition well (we’re lucky that he absolutely adores school), and, to put it bluntly, I know I’m going to go completely bonkers with him here every day, all day, no breaks, and no help. However, there is a possibility that I’ll be going back to work sometime soon, so if that happens, there will be day care…if we can find a place that will take him. A place that is equipped to handle kids with special needs. The last day care experience we had was anything but good, so I’m already experiencing a lot of anxiety about this.

There are some people in our lives who, believe it or not, refuse to even say the word “Autism” or “Autistic.” They either feel like they’re insulting Ethan, insulting us, or they grew up in a generation where the word “Autistic” may as well have been synonymous with “Retarded,” so they’re ashamed of it. 

Well, as isolated and lonely as I may feel now, I’m not ashamed. I will never be ashamed of Ethan, because Autism just means different…not less. He is just as smart, just as loveable, just as funny, and just as amazing as anyone else’s child. But he’s my child, he is fearfully and wonderfully made, he is beautiful, and regardless of how alone I may sometimes feel, I will wear my Scarlet Letter proudly!  

The Game Changer

I can’t think of a good way to start this post off, so I’m going to be honest and start it off the way it played out in my head. I’ll go ahead and briefly apologize for my lack of entries the last few weeks, but my dad was in the hospital for a very long time; it involved a lot of back-and-forth on my part and disruption of our family schedule, which Ethan – well, okay, none of us tolerated it well. But my dad is home now and getting better, so I’ll be doing my best at regular postings from now on. So, down to business with an update.

Let me start off by saying that about three and a half weeks ago, we experienced a Game Changer.

What I mean by this is that three and a half weeks ago, we had Ethan’s psychological evaluation at the Regional Center. This was the big one, to see if he qualified for ABA (behavioral intervention). Normally with a diagnosis of PDD-NOS or even Aspergers, kids are not considered “autistic enough” to qualify for treatment. This, however, was not the case with us.

The interview was quick, maybe 30-45 minutes. Ethan did not engage in any imaginative play. He was able to put together puzzles very quickly. He held onto a green plastic ring from a baby ring stacker that he had found in the doctor’s toy box for the entire interview. He repeatedly came to me and said “Hi, Mommy!” seeking reassurance. He made some eye contact with the doctor, but did not acknowledge him as a stranger or display any kind of nervousness around him. He had trouble transitioning from activity to activity, although there has been tremendous improvement with this since he started school a few months ago.

The doctor fired questions at me left and right, not giving me much time to think about them, which I think was good –it probably would have given me a way to “get out of” answering truthfully. At the end of the interview, the doctor sat back and watched Ethan intently for a bit. He then looked at me and said that he thought Ethan was a very nice boy and that I was very poised and handle him very well, for which I thanked him. Then he asked me “The Question.”

“So, Mom, what do you think?”

“I think he’s autistic.”

“I do, too. I’m recommending full services.”

And there it was. That word, the "A" word. This is what we’ve wanted and needed since we started this process almost a year ago: a diagnosis. So why am I still so sad? 

Because now, my child is not just on the Spectrum.

Now he’s autistic.

But I still love him with every fiber of my being, and I will still fight with – and for - him, every minute, every hour, every day, until my last dying breath. He is still my little boy, my everything. And I will always be his mother. Many things in life are Game Changers, but Autism will never change that.

The Mommy Meltdown

I’m not usually into displaying my own vulnerabilities – things I tend to think of as “weaknesses” on my part. However, I said at the beginning of this project that I was going to be open and honest; the good, bad, and downright ugly, right? Well, here’s some ugly for you:

 On Friday, I had a Mommy Meltdown.

Now, those of us with Spectrum kids know how horrible and awful it is when our little ones have meltdowns. I think it’s even worse when I have a meltdown. See, I’m one of those people that has a tendency to bottle things up (sometimes without even realizing it) until I’m like a pot simmering over…until that one thing on that one day causes me to lose it, only instead of just seeping out over the sides and hissing impotently on the stove burner, I turn into a kind of geyser. Everything I’ve been holding in comes boiling to the surface, and I lose it. I don’t mean I tantrum like Ethan does, at least not in the way he does.  I have a grown-up tantrum. I say nasty things (no, not to Ethan, although I won’t pretend I’ve never made that mistake. We all have; let’s just lay it out there on the table so we can see it right now, shall we?). I stomp around the house ineffectively. I cry (translation: I have a very quiet yet gut-wrenching sob fest until I’m a blotchy, swollen mess). I say over and over again how I can’t do this anymore. I curse God for giving me a son that is such a challenge. I curse Him for condemning my son to this existence. I blame Ethan and rant to my poor husband, asking why Ethan can’t just “be normal.” I blame myself. I blame my husband. But mostly I blame myself.

Mostly, I just cry.

When I have these moments of weakness, it’s my husband who reels me back in and talks me down. He reminds me of how breathtakingly beautiful Ethan was as a baby, and how breathtakingly beautiful he still is – how much progress he’s made in the last few months, and how far we’ve all come in the last year. How far we have yet to go, and how I have to continue to hope. My husband is amazing. I don’t tell him that enough, and God knows there are moments when we can’t stand each other (as is true of any married couple, let alone a couple that’s been faced with the challenges we have), but I don’t know if he will ever truly realize that most of the time, he’s the only thing that keeps me firmly anchored to the ground. I love him so much. Those words seem so inadequate, but I mean them with every ounce of my being. He praises me, even when I feel I don’t deserve it. He tells me that I’m an amazing mother to our boys while he wipes my tears away. He tells me how much he admires me while he holds me and rubs my back, smooths my hair. He makes me feel, incredibly, somehow, that I’m not as horrible and awful as I think I am.

He makes me feel loved. He makes me feel worthy. He lends me strength when I have none. And even in the midst of my meltdown, my vulnerability, my complete and utter weakness…mostly, he makes me feel like I can do this another day, and that tomorrow, I’ll be just a little better than I was today.

Mostly, he just loves me.

Conversations with Ethan...

We encounter many roadblocks every day with this mysterious being that is PDD. One of them is the most vital: communication. Now, don't get me wrong; Ethan has made vast improvements since starting speech therapy about five months ago. But for a long time there, the only way he knew to communicate with us was by hitting, shrieking, kicking, throwing things, you name it. Oh, he tried to talk. We tried to help him talk, but he would get so frustrated it usually ended in tears - for Ethan and me, sometimes. He also understood everything we said and could follow directions (e.g. "Go throw your plate away, then go get your shoes from your room and bring them to Mommy."), which I think made (makes) it all the worse for him. How would you feel if you could understand what everyone was saying to you, but you were unable to respond? I'd imagine that's how aphasia patients feel after suffering a stroke that damages the language center of the brain. Sort of like when the doctor asks you the name of the object you throw garbage into (a trash can) and you call it a brick. Only, Ethan knows it's called a trash can, but to him it's "the Yucky." And yes, I think of it that way in my mind when I hear him say it - like "Yucky" has a capital "Y" and is now a proper noun. Because Mommy always told him when he was little that trash is yucky...get it? So when I tell him to throw something away in the trash can, he waffles and dawdles, and finally when I'm about to lose patience after telling him the 8th time, he'll tell me: "Ohhhh...I wanna say 'bye-bye trash can, have a good day...you gonna say 'I told you to throw it in the Yucky!'" Then once it dawns on me that his brilliant little spectrum brain fuels that compulsion to hear that one particular word or phrase which will then allow him to perform said task, I realize what I've done wrong and have to say: "You're right, Ethan, I'm sorry; please throw your napkin in the Yucky," at which point he will joyfully run to the trash can in the kitchen, stomp on the step to raise the lid, and throw his napkin away, then clap his hands and say "Yaaaay, I did it, Mommy, thank you! You put the napkin in the Yucky with Ethan!" He also mixes up his pronouns; refers to himself in the third person, first person, and as a completely different person...sometimes all in the same sentence.

These are some of the stranger conversations I've had with my son.

(Today, when I picked Ethan up from school.)
 Me: Did you have fun at school today, buddy?!
Ethan: Ohhh...I want Ethan to go back to school.
Me: Well, you will go back in 2 weeks; you're on Spring break, you're on vacation!
Ethan: Ohhh...I wanna say "bye-bye vacation, have a good day." I want Mommy to be happy!
Me: I am happy, buddy! Let's go home and show Daddy and Baby Brother your Easter goodies from your egg hunt!
Ethan: Um...okay. I wanna watch (he means "listen" here) Judas Priest in the green car. I wanna say "Go, green car, go."

(During a particularly cranky bedtime in which I had just told Ethan to stop messing around and get ready for bed.) 
Ethan: Ohhh, I want Mommy to be happy!
Husband: Mommy's happy, buddy, but she's right: it's bedtime. You need to calm down and let Mommy change your diaper so we can get you in bed.
Ethan: Bye-bye Mommy change your diaper, have a good day!
Me: Ethan, I've had enough. Lie down and let me put your diaper on, now.
Ethan: Oh, I want Mommy to be gone! I want Daddy change your diaper!

(During one of Alex's diaper changes. I should probably mention that Ethan has a fascination with watching me change Alex, but he expects there to be poop every time.)
Ethan: Baby Brother really poo-pooed. Big poops, whoa!
Me: Nope, no poop, just pee!
Ethan: ...I wanna say "Baby Brother really pooped!"
Me: I know, buddy, but he didn't poop, he just peed a lot.
Ethan: Ohhh, bye bye, pee, have a good day!

Given examples like the one above, I'm sure you can imagine that some of these conversations with Ethan make us laugh. In fact, a good number of them do. However, as I said before, there are moments of frustration. For Ethan, for me, for my husband. Sometimes these moments of frustration overwhelm me and burgeon into sheer anguish. Will my son ever say something simple to me like, "I don't want to watch that. I want to watch such-and-such" or will he ask me a simple question like, "Mommy, can I go play outside?" instead of "I want Ethan to go outside!" in that drone that lacks any real inflection.

Because what I want more than anything in this world is to talk to my son. I want to have him ask me questions that other almost-4-year-olds ask their moms. I want him to ask me why the sky is blue, or why his favorite TV show isn't on today, or what's for dinner, or - yes - even the dreaded "Where do babies come from?" I want to see the inquisitiveness on his beautiful little face while he listens to my explanations. I want to see another question formulating in his brilliant little brain before I've even finished answering the first one. I want to know that these things are possible for him, for us. So every day, sometimes several times a day, when I get frustrated or sad and think that I can't take it anymore, I try to remind myself of how far he's come in these last five months. What will he be like in another five months? Another year? Two years? When he's ten, thirteen, eighteen?

I continue to hope and pray, because at this point, that's all I can do. And I continue to love my son...because how on earth could I not?! Just look at him!

PDD-NOS, Ethan, and Me

The challenges of living with (never mind raising) a child with PDD-NOS/SPD (that's Pervasive Developmental Disorder Not Otherwise Specified and Sensory Processing Disorder) are innumerable. Today is a stark reminder for me, as I change my almost-four-year-old son, Ethan's, diaper, while listening to him jabber away in his own language. Echolalia is a frequent pastime of Ethan's, as is lining up toys, boxes, plastic bottles, turning light switches off and on, intermittently avoiding touching his 8-month-old brother, Alex, and spinning in circles while shaking his head and singing the words to Judas Priest's "Bloodstone" from memory...although no one can really understand him except my husband and myself, due to his delayed speech. He's really more on the level of a 2-year-old when it comes to language. Academically, though, he's right on par; in fact, when given an IQ test (which he was unable to finish because he refused to cooperate with the examiner), he was answering questions that were more on the level of 6- and 7-year-olds. He also has near-perfect pitch and a memory like a steel trap.

If you haven't put two and two together yet, I'll make it easy for you: PDD-NOS is a fancy way of saying that my son is on the extremely high-functioning end of the Autism Spectrum. I mean, he scores high, but it's obvious to anyone who spends any significant amount of time with him like I do that his behavior is pretty typically autistic a large part of the time. On the GARS-2 (that stands for Gilliam Autism Rating Scale, Second Edition), a score 85 or higher indicates a very likely probability of autism. Anything from 70-84 indicates the possibility of autism. Ethan scored 72 in his initial assessment, and 5 months after starting speech therapy and occupational therapy, he still scores 70. What a tease, wouldn't you say?

 Either way, my son is on the Autism Spectrum. 

It still hurts me to say those words...even typing them is painful. But it is what it is.

In this blog, which I expect will remain largely private, you're going to see the good, the bad, and the ugly. I'm going to share it when Ethan pushes me over the edge and makes me hide in my bedroom and bury my face in my pillow so I can scream until I go hoarse. I'm going to share how certain people have withdrawn from us and how some have outright abandoned us because they either don't know how or don't want to deal with Ethan and his behavioral issues. I'm going to share (minus details, of course) when my husband and I reach our limit with our oldest child and each other and get into some rip-roaring arguments.

I need to share. I need to know that other people go through what we go through every day. I need people to be aware of what we go through every day. And I need people to know that my son is still amazing, even though he's on the Spectrum.