Wednesday, March 27, 2013

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.

Thursday, March 21, 2013

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 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!

Tuesday, March 19, 2013

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.