Monday, January 21, 2013

The Expected Becomes Unexpected

I feel like I often only have the itch to update our blog when I have something profound, deep, very funny, or sentimental to say. This if course means that I don't update often. I mean we live a normal life, it is not all "ah ha!" moments, epiphanies, and self realizations.

A friend once told me that my blog entries are always lovely and deep and hers are always "I'm grateful for chocolate" Lol. The truth is, we have many days that nothing exciting happens at all. In that I no longer have expectations for how things are supposed to go down. I really no longer look forward to milestones that I can brag about, that leads to disappointment and sadness, and really why do that to our family?

When Asher was born there were a lot of thing I expected to happen, normal things, but markers and milestones that I looked forward to happening because I knew that they would. Teething, crawling, walking, talking? social talking and reciprocity? Those things just didn't happen the way I expected. There are a lot of things I didn't expect as well. Medical problems, sensory issues, speech delays, developmental disorders, Autism.....I didn't expect any of that. But over time as these things appeared in our lives, we started to realize that we began to expect those unexpected things to happen. Our new normal changed from "why us?" to "why not us?" and "it only make sense at this point that one more thing would fall down on us" This reversal in thinking happened slowly, but it is what it is.

But sometimes, there are things that go down that I had at one point expected to happen. These normal things, the expecteds, they are all very unexpected, so when they happen and we are shocked, people look at us and say "well yeah, of course, what did you expect to happen?" I guess I expected anything but the normal, the regular, the "of course!"

The other day my niece Kylee came over to play with Asher. For the most part they still play side by side, but only sometimes with each other. This is expected for me. Kids like Asher with PDD-nos tend to play by themselves, and even though Asher has a bright social spark (His neurologist's words, not mine) and doesn't meet a lot of the social markers for Autism, he is still behind in some of his play skills. This is our expected.

Sometimes I will sit with Kylee and Asher and script the play for them, ask questions, give them language, help them take turns and share. This is something I've become quite good at in all my years of teaching language impaired kids. We often joke that I went to school for language disabilities because God knew the kids in my life would need me to have those skills, not really to be a language teacher. As it stands for now, I can do both.

On this particular day however, I decided I needed time to read while they were playing nicely, quietly, and didn't really need me. I expected them to play by themselves, I expected fights about sharing, I expected Kylee's feelings to get hurt and for Asher to have zero empathy towards her. I expected these things, because again, things that would concern most people have just become normal.

But here is what happened instead. I'll write this up like I would write up a language sample to make it easier to follow.

Asher: I go a party
Kylee: Was it a burfday party?
Asher: Yeah
Kylee: My burfday is Sesame Street Abby party
Asher: I haffa Buzz party
Kylee: You have cupcakes and chips at the party
Asher: haffa buzz cake
Asher: haffa sheriff woody inna aliens
Kylee: Asher you should have cookies and candy with those cupcakes
Asher: yeah candies
Kylee: Can I have some candies?
Kylee: Can I have some alien candies?
Asher: Aliens!
Kylee: Asher you crazy!
Kylee: Auntie Asher is crazy
Asher: yeah I crazy.

Most people would expect a conversation like that with an over 4 year old and a basically three year old. I'm not saying they wouldn't smile and think "omg how cute, I can't believe I heard that! Aww they are getting so big" They'd be impressed sure. But they wouldn't be sitting there crying, thinking "Oh MY GOD! They are Geniuses! The SMARTEST kids alive!" Which is what runs through your head when you never in your faintest imagination and wildest dreams saw a conversation between two language impaired children going down in this manner. I'm sitting here all proud Auntie and so happy I'm crying Mama, over something that should have been completely expected or even if you're one taken to brag like myself, a moment that would have lead to a Facebook "My kids are so cool listen to what they said" comment. But I couldn't move. I just sat there listening and hoping for more, with an insane amount of happiness, but also shock running through me.

And it all circles back to the funny little thing in life called Hope. People often say "wow you're so positive!" Which you know, isn't the most truthful version of how things go down...not at all. I'm learning with the help of others to be more positive to be more hopeful, but I'm not Miss Sunshine. I often feel like "poor Asher" and "poor Phill" have quite a battle ahead in life just having to live with someone as difficult, sensitive, and taken to saddness too often and too easily. But I am trying for them.

I also get comments about hope. Asher's neurologist often says "I don't know how you're doing it, but you're holding onto that hope! Not all parents can and do" This is how it happens, your hope hovers somewhere below the norm, sometimes it is barely a whisper. You wake up and you expect to see a child struggling with skills well below what is developmentally appropriate. And hope is just laying somewhere dormant in the back of your head. This is what you expect, to have what others would consider a worrisome day. And then you get instead what others would completely expect to get waking up to a new day and it is so unexpected. And your hope taps on your shoulder and says "I told you so, now stop moping and go enjoy that little boy"

But you know on the surface, nothing profound, amazing, deep, sentimentally gooey here at all. Just two little kids, playing together, having a fun conversation planning a birthday. Just a simple expected day, or is it?

Monday, January 7, 2013

The student becomes the teacher...

I once read a quote that made me giggle for days. "It is called the terrible twos, because "fucking awful" doesn't start with a T" Even typing it, I giggle. There are many thing I enjoy about Asher being bigger, I like that he chats more, he wants to tell us stories, that he is more independent in some ways and needs us more in other ways. If I could count the amount of times in a day that he needs boo boos kissed, hugs, or snuggles....well I'd be rich if society really placed value on those things. As it stands, I put a lot of value on them. Which is why I love this age. HOWEVER, it comes with challenges.

There is the sharing challenge. The biting challenge. The tantrum when something doesn't play out exactly the way I want it to challenge. The picky eater challenge. The nose picking challenge. The I don't want to wear shoes challenge. The I want to wear shoes and I'm not taking them off so deal with mud and snow on the floor challenge. The I don't want to use the potty challenge. The I want to wear underwear, but not use the potty challenge. The I really want to use the potty but didn't make it so now I'm going to cry for hours challenge. The don't you dare brush my hair or my teeth challenge. The I don't want to take a bath challenge. The I want a bath so bad that I don't care what else we are doing, you will stop and give me one right this instant challenge. The I want to dump out all the drawers, cabinets, and empty all bookshelves of books challenge. The I wonder what this taste like challenge...which may include things like bars of soap, shoes, cat litter, or the toilet bowl brush. The I will not sleep when you want me to challenge. The I will sleep smack dab when you don't want me to challenge. The Auntie's playroom is better than mine so I just won't go into it sit outside and cry for my toy's challenge. The hitting when frustrated challenge. The I want to be naked and I don't care who is over challenge. The pulling the cat's tail challenge. The I wonder what my poop will look like on the wall, in my hair, in the carpet...anywhere really...that challenge.... The list goes on and on. If you have children, I'm sure some of those brought a giggle. If your children are older, you read them and thought "I'm glad we're out of that phase" or you thought "She left out these 500 challenges" Trust me, it is not because we don't have them, it is because my wrists will ache if I list all of them.

So instead I need to talk about the challenges that are unique to Asher and kids like Asher. If being two wasn't difficult enough, being two and Autistic or with Autistic tendencies...well that takes the cake!

While Asher has made tons of progress with language, he still struggles to communicate when he is frustrated. And people will say "all children have tantrums" Thank you, I understand that. I was a nanny, a big sister, I am an aunt, my friends have children, I've worked at a daycare, I've gone to the mall, toy stores, Target....for some reason there are lots of tantrums in target, I am a teacher. I am surrounded by children, I've seen normal tantrums. So feel confident that when I say Asher's tantrums are sometimes very different, that I have considered what a normal tantrum looks like. And these tantrums are epic, not because they are louder...sometimes they are, but often times not. Not because they are violent, because they aren't, not because he is more angry. No, it is because he is sad. Mournful and dissapointed, and almost defeated. He struggles with the concept that mistakes happen even when you try hard, even when you want it more than anything else.

Asher takes his failures like they are marks against him and he will apologize to us for hours. Sometimes I fall asleep at night and hear the echo of "Sorry Mama!" in my head, due mostly to the fact that I had heard it so many times that day, but more importantly, that he was so deeply sad when he said it. And he still doesn't understand that he doesn't have to be sorry that he didn't make it to the potty, or that he slipped on the ice, or that the cat scratched him, he spilled a little water, or that he couldn't think of a word.

He is sensitive to the word "sorry" so trying to teach him when to say sorry has been a "special" experience. When he hits or pushes, he can't bring himself to say sorry. This happened to me when I was little and I think it had a lot to do with pride, but for Asher is has a lot more to do with the sensory over stimulation that lead to the behavior in the first place. So we hug him from behind and take his hand for him and make the sign for "I'm sorry" on his belly, while we make him look at whoever he is trying to say sorry to. He always goes and gives the other person a long extended hug and after a few minutes will say "Sorry Mama...Daddy....Kylee...Ethan...Auntie..." But it has been almost as tough to teach as potty training...almost.

A few days ago I was sitting in the living room and my cat Dr. Seuss, scampered by me and dug his nails into my leg in the process. I immediately yelled "Seuss you suck!" Asher came up beside me, took my arm and made the sign on my belly for "sorry" and said "I sorry...say sorry...sorry Seuss!" Then he put my hand down and said "huggies" So I picked up Seuss, who still sucks by the way, and I hugged him. When I put Seuss down Asher said "say" I tried not to smile, because this is serious business for Asher, it was tough though. I looked at Seuss and said "I'm sorry Seuss, that was a mean thing for me to say" And Asher smiles and then gave me kisses. After kisses he ran away to play with his toys, but stopped at the door and said "Mama?" "A pwod a you" He was proud of me! And that made me tear up a little.

So some of our struggles, they suck. They are sad, frustrating and sometimes they make us cry. Sometimes it doesn't seem like Asher is learning anything from us at all, than nothing is sinking in. But then the light turns on "Ah ha!" and the student becomes the teacher! I'm grateful for the "ah ha" moments Asher gives us, when we realize we have so much to learn from him still, that we will teach him many things about life, but it may just be that he will teach us so much more.