I was reading an article the other day on Salon.com about autism. It was a personal essay written by a novelist and somewhere in there she dropped the following quote from anthropologist Kate Barrett:

“Parenting today has become an acceptable out, what we call a ‘master identity.’ It’s become a way we don’t do other things in our lives: whether it’s fashion, whether it’s work, whether it’s romance, whether it’s fitness. Being a parent — especially being a mother — becomes an acceptable excuse for not doing other things.”

The novelist used this quote when she was talking about mothering a child with autism. She  was explaining about how she didn’t relate to mother’s who devote their lives to the care and advocacy of their child when there are other things they could be doing. Gosh, did those two thoughts stick with me. The idea that just being a mother is not enough.

I’m not sure I completely understand what anthropologist or novelists do, but I do know what I do. I am the interpreter between my child and the world. I am his advocate. I am a researcher, a teacher, and a therapist. I am the protector of his health and a record-keeper. I am preparing as best I know how for his future–pushing skills like reading and writing, investing in technology, and watching closely when others with similar disabilities succeed.

I am NOT a powerhouse mom. I’ve never spoken at the State Capitol about the need for services–although my state is one of the few that wait-lists children with disabilities (for as long as ten years). I still haven’t bought the dang Wright’s Law book even though people have been telling me to for two years now. I’ve never organized a group to walk or fundraised for cerebral palsy, or epilepsy, or even the March of Dimes. I’ve been to one PTA meeting and found it overwhelming to say the least. I admire the women who do these things, but I’m not one of them. I waste precious time on things like finding coordinating outfits for a special occasion. I goof off on Twitter, and obsessively update my Goodreads profile. I’ve probably wasted weeks of my life on Facebook.

I am just a mom. Some days I find myself scarily unambitious.  I’m not secretly filled with a novel or dying to start my own business selling jewelry or candles or cooking supplies. Most days I’m too tired to attempt anything more ambitious than reading a book.

It is enough–being just a mom: being a cook, a therapist, a teacher, a guide, a chauffeur, a nurse, an advocate, a cheerleader, and a personal assistant; being entrusted with mindless jobs like making bottles, reading food labels, scheduling appointments, wiping butts, singing silly songs, and reading that story one more time. Really.

Maybe when my kids are older (and less needy) and I’m getting a little more sleep,  I’ll do something that the rest of the world finds more valuable. I could go back to teaching, which I found incredibly rewarding, or spend a little more time painting. They won’t ever convince me, however, that these jobs were more important than the one I’m doing now. It’s unglamorous and truly, anyone can do it, but that doesn’t make it less. I’m giving my children the foundation upon which the rest of their lives will be formed.  I’m passing my values on to my children in a physical way–hoping that this will help create adults who do the same. I’m walking the walk even when it’s messy, painful, and exhausting.

So yeah, I’m just a mom, and that’s fine by me.

Fear–such an obvious topic for a special needs mom to talk about, right? I mean, I should be filled with The Fear–will my child walk? Will he hold a job? What will happen to him when I die? But here’s a confession: I cope with all of these things using the Scarlett O’hara method–I just don’t think about it. Maybe not the best solution, but I’ve never actually solved a problem by worrying about it in advance and I spent a lot of Charlie’s infant days worrying abut things that never happened or if they did happen, it was as big a deal as I thought.

So basically it’s taken me a paragraph to tell you that it’s Charlie’s fears that I’m thinking about today.

Charlie’s a tough little kid. I doesn’t cry at blood draws. He handled a bunch of Botox shots in a way that I don’t think I could have. He’s very tough, but lately I’ve noticed that he’s gotten extremely fearful.

He used to love the water, but now he’s not capable of enjoying the pool at all, which makes me very sad. He will sit in the bathtub, but if I lie him down in the water, he is frozen with fear and claws at the sides of the tub.

The other day I sat him on the bottom step of our porch and he twisted awkwardly to grip the step behind him. He’s really good at sitting on a bench with feet flat, but when put in a new situation, he freaked out.

I’m glad he has awareness. We spent years dealing with medication fog, and it’s positive that he’s taking things in and processing them. I don’t want him to be scared of the world, though. Right now the twins are in a pulling up phase and about a million times a day I say, “It’s OK! People fall. Just get back up.” How can I teach Charlie that same thing?

Caution is good, but a four-year-old shouldn’t be fearful. I know he’s working with a body that doesn’t always do what he wants it to, but I want him to try. I want him to push. If he doesn’t, I can’t imagine he’ll go very far. I don’t know if this is some sort of stage, or if there are deeper things going on that need to be addressed.

So often I find myself sitting around wondering what the next step is–trying to find the path when it’s not clear. It’s one part intuition, two parts Google search, three parts the wisdom of others, and praying like hell I don’t screw it up too badly.

Too busy booging to look at Mommy's camera.

Charlie got off the bus today looking like this:

It was field day at school and apparently they had found a way for him to participate. They told me that he had had a great day and I was thrilled. I even called his Mawmaw so she could come over and check out he dazzling face decorations.

Right before bed, I got the idea to open up his communication app (I’m using Proloquo 2 Go now since it produces larger letters than the Notes app). I thought I’d ask a couple questions and see how far he’d let me go. It went something like that:

Me: Did you enjoy Field Day today?

Charlie: n-o

Me: What? I thought they said you had a good time–why didn’t you like Field Day?

Charlie: h-o-t

Me: Ahhhhhhhh Did you like getting your face painted?

Charlie: Y –at this point he tries to stop typing, but I make him do it anyway. e-s

Me: Did you get to say hello to people today?

Charlie: y-e-s

Me: Did you like that Mawmaw came over to see your face paint?

Charlie: y-e-s

At that point I ran out of questions and he ran out of patience, but Holy Moly! a real conversation with my kid. I’ll admit, it was a lot of yes/no, but I really wasn’t expecting him to answer so many questions.

My heart is happy–I had my first real conversation with my son. Who knew how amazing that could be?

A few days ago I got it into my head that it’s time to start teaching Charlie about letters. Unlike almost every early childhood program out there, I had opted to start Charlie on whole words and then go back and teach individual letters after we’d built some sight words. I had my reasons and they were based on scientific research and all that, but I won’t bore you with all the details.

So, out of nowhere I decide it’s time to start talking about letters. I sit Charlie down in front of his iPad, and bring up the Notes app (not the best choice, but fine for the moment).  I start a new note which brings up the key board and then go into my nifty teacher mode.

“So, Charlie, today we’re going to talk about letters. Can you see all the letters here? Tell me–do you know which letter is the first letter in Charlie?”

I take his hand and hold it in the pointer position–he’s come a long way in this area, but he’d still rather have someone else do his pointing. I wasn’t really expecting him to answer. I was doing that obnoxious thing that teachers do where they ask you something that they know you don’t know, and then they just go and give you the answer.

Imagine my surprise when his little arm immediately pecked on the letter C. He did it so quickly that I had a feeling we were going over old territory for the little guy. I went ahead and asked him the next letter feeling pretty confident that he wouldn’t be able to do this one–whenever we study his name, we use a lower-case h and the keyboard features an upper-case one.

Yeah, he got that one in about five seconds as well. This is the same moment that he got very, very bored with the activity and began trying to close the application. I pushed on. He had some trouble with the letter i, but other than that, was able to spell his entire name. Later, my MIL, who teaches Kindergarten, explained that i on the keyboard looks completely different than the i that we teach children–no serifs or dots on the keyboard. She said it’s a pretty common problem for small children. Charlie and common are two words rarely used together.

Over the next few days I have discovered that he can spell Charlie, Mommy, Daddy, Max (our cat), red, and Rude Boy. That last one is a horror show of a Rhianna video that I wish I had never downloaded because he loves it and it is SO not for children.  He cannot spell Buster, who is the family dog. Basically, he can spell most of the words that we’ve studied in reading. He also seems to know his letters already–he taps those out quickly if you say one out loud. Don’t know if it’s every one, but it’s plenty.

I’m pretty thrilled. I’ve done a lot different things to try to teach Charlie and it’s unbelievably good to know that at least a small part is sinking in. My husband was completely skeptical–he didn’t even want to watch Charlie work–but I made him sit down and see for himself. Afterwards, he said to me, “Mind. Blown.”

Not exactly sure where to go next with this, but I’m happy none the less. I decided a while ago that Charlie’s best bet for communication would be something  computer-based. Will it be typing? I have no idea, but I do know that spelling and reading are the building blocks of communication for him–the keys to expressing what he’s thinking and feeling. Seeing it in front of my eyes is downright amazing.

Just listening to music, but maybe one day he'll be able to tell me things.

OK! Charlie and the twins spent the last week and a half passing around some sort of throat virus. That meant doctor’s appointments, days of missed school and the twins went for about a week where one of them was up every hour.  I love my sleep very dearly and getting up every hour is my personal hell. I spent many, many moments wondering what in world I was doing being pregnant with another baby when I was so clearly not able to handle the ones I already had.

Luckily, things have returned to normal, and here is my long-overdue Week in the Trenches Post. So overdue that it actually covers more like two weeks.

Every year in Louisiana, we have a few weeks of perfect weather. We’ve been enjoying them to death by sitting on the front porch as much as possible. Even my busy-body Louie likes the porch because he’s fascinated by the cars driving by.

I had one of those magical weekends while thrift store shopping–I found some milk glass and some really great vintage Pyrex pieces as well. That’s the thing about thrifting–some days you find a ton and other days you find nothing. I’d been in a very long dry spell, so this was real treat for me.

My first sickie at the doctor’s office. He was diagnosed with a virus of the throat. In no time flat he had passed it on to pretty much everyone else in the house.

Now this is about the coolest thing ever. You guys know that I’ve been pregnant for what feels like forever. Well, I’ve had no fun cocktails in about as much time. The sadness! Well, I heard that Crystal Light had introduced a bunch of mocktails to their line and I was tweeting about how I desperately need to try some and guess what? They offered to send me some samples to try!!! Ahhhh. . . so nice to have something pretty in a glass besides water. If you have a pregnant friend, you should totally buy her some.

As a total aside here: Crystal Light has another product on the market called PURE. They’re aimed at sports drinkers, but I think they might appeal to special needs parents as well. They’re clear, so no nasty dyes and they’re sweetened with a Stevia/sugar blend so that’s nice too. My kids don’t drink anything but water, but I think they’re pretty tasty.

Me and some other blog/twitter types at the Coaches v. Cancer event. This was one of the honorees, Coach Dale Brown–a very famous LSU basketball coach (that’s my alma mater!).  From left to right you’ve got Aura Fedora, Me!, Linzy Cotaya of Crawfish Tales, Dale Brown, Bridgette of The Experimental Mommy, and Cara of Peanuts are Evil. We look pretty hot, right?

The twins have discovered that they are next to each other–they’ve also discovered how to get into each other’s cribs. This, of course, means that we’ll have to find other sleeping arrangements for the two monkeys. In the mean time, every night is a baby slumber party in this joint with yelling, giggling, babbling, and tons of baby shenanigans.

Whew! That was a lot–no wonder I’m so tired!

I was cruising Facebook while Charlie was in therapy and I spotted a prayer request in a friend’s status. She was asking for prayers for a family that had just lost their three-year-old daughter to cancer.

The announcement was cold water in the face because I recognized the last name instantly. You see, I knew that family, and I knew that they had already lost a daughter. In fact, our children had been in the hospital at the same time–mine had lived and theirs had not. I brought home my Charlie and they planned funeral.

What do you do with a revelation like that?

You search for answers–why? why did this happen? But there really isn’t one. Two children lost to two totally different illness–both of which are just luck of the draw.

You grasp for a reason because if there isn’t a reason–if bad things really do happen to good people–and in this case, over and over–then what does that mean for the rest of us? There’s no protection, no safe guard. We all want to believe that if we’re good people who lead good lives, then we’re safe from the worst. And if the worst has already happened, you like to believe that it’s a little insurance policy: you’ve had your slice of crap, so now it’s somebody else’s turn.

We wrap ourselves in these lies–we hug them tight at night when we sleep. We whisper them to ourselves when we’re scared.

But there it is: nobody’s safe. Nobody’s exempt.

Most days I know this and I accept it, but not this time. This time it shakes me and reminds of things I’d rather not know. This time, it’s real.

The twins were born about nine months ago. It was a wonderful experience for me and my husband and despite a NICU stay, and some hiccups (aka Louie, my drama queen), I felt very grateful to have my boys in the world and relatively healthy.

At that same time, however, some serious drama was unfolding with my family. Drama that wasn’t mine to talk or write about despite the fact that it took up a large part of my consciousness. I have gained the necessary permissions so I can tell you all this story now.

You see, in June, while I was lying on my side on mandatory bed rest, doctors found a tumor in one of my sister-in-law, Sadie’s, bronchial tubes. This was after months of horrible coughing and a general deterioration in her health.

Scary is an understatement. The stats on lung cancer are grim and it took two different procedures to get enough tissue to get a sample for testing. Meanwhile, I’m stuck in the hospital by myself and wishing there was something, anything I could do. I’m a doer and lying around waiting to heal from a c-section is pretty much the opposite of doing anything. Well, I was pumping milk, which gave me plenty of time to stew and worry and maybe cry, but didn’t make me feel one iota better about not being there for my brother or his wife.

We spent three painful days waiting for results and when they came in it was official: she had cancer. She had just turned thirty and in the course of six months a tumor had developed that was so large it had managed to collapse one of her lungs. Doctor’s surmised that pneumonia had set in there and that it would stay as long as the lung was unable to work properly. All in all, it was a pretty hellish diagnosis.

The good news, if you can call it that,  was that it was not lung cancer. It was actually a form of lymphoma with a fantastic remission and treatment rate.

Last month, after a six rounds of chemo, Sadie was declared cancer free. These days instead of planning her life around oncology appointments, rounds of chemo, and PET scans, he’s busy planning a trip to London with my brother. We are all so happy and relieved and hope that this is behind us for good.

Sadie!

When the American Cancer Society asked me if I would tweet about about their big Final Four event this weekend, I jumped at the chance. I mean, I was surprised, but glad that I could do something when I’ve felt so completely useless in the past. They are a great organization with a fantastic website that I have turned to often when I need more information.

So this weekend I’ll be attending The Coaches’ Huddle Cocktail Reception in New Orleans–an event that occurs in conjunction with the Final Four Basketball Tournament. There will be music, food, and lots of basketball people that I know nothing about. It’s also going to raise a ton of money for cancer research which is my idea of a wonderful cause. Everybody should get great statistics. Everybody should get a fighting chance.

So. . . I’ll be tweeting the hell out it on Friday plus posting pictures and whatnot. Hubs and I will be dressing our best! Please don’t expect much sports talk–I don’t have any. If you live in the New Orleans area and want more information, visit their Facebook Page. If you want to buy tickets, check out their website.

So Lou.

We’ve made some progress with solid food–he seems to be doing just fine with fruits of all types–bannanas, apples, pears, grapes, and prunes have all worked out. He still seems to be having issues with oatmeal, so I may try rice. Rice was a disaster for Charlie, so I’ve avoided it, but maybe it will work for Louie. Who knows?

Well, Lou started crawling about a week and a half ago. It’s a commando crawl and he is into EVERYTHING! Charlie likes his boundaries, but Louie has never even heard the word–one minutes he’s in the room and the next he’s two rooms over flipping the dog’s water bowl over. The Hubs and I are 90% amused and 10% scared that he’s going to do something disastrous.

Then I noticed that Louie’s crawl is very one-sided. He uses both arms, but a lot of the time he’s only using one of his legs. I watched him for a long time and then I began to panic–just a little.

Now, I KNOW you’re not supposed to consult Dr. Google in these situations, but of course I did, and I found an article all about how asymmetrical crawling can be an early warning sign of autism. Louie’s already at a higher risk for autism since he’s a preemie and he’s got these food issues, which I’ve seen in other children with Autism, so basically, I freaked out. I mean, not crying or anything, but I went into crisis-management mode. I thought about diet. I was considering what to do about his vaccine schedule. Thought about having Early Steps come out and do another evaluation to see if he would qualify for services. Should I add private OT to his services? I was in Special Mama Mode.

Just Chillin'

So when we got to the PT who he sees for torticollis, I pounced: Look at his crawling! Potential early autism marker! Are you seeing anything else? Do I need to get him into OT?!?

And she? Well, she chuckled, and then told me that about half of her torticollis patients eventually show asymmetry somewhere else on their body. As for other signs of Autism? That was why she was chuckling–because Louie is so intensely social.

I’m relieved. Mostly.

I still might stick to organics and slow down the vaccine schedule. You never know.

Also: I might be a little bit crazy.

]]> http://birdonthestreet.com/2012/03/obsess-much/feed/ 19 http://birdonthestreet.com/2012/03/baby-steps/ http://birdonthestreet.com/2012/03/baby-steps/#comments Wed, 21 Mar 2012 04:27:27 +0000 katy http://birdonthestreet.com/?p=4381

As I’m sure I’ve mentioned before, Charlie has motor planning issues. Basically, this means he has trouble getting his body to do what he wants. It takes a ton of work and repetition for him to master a movement. Aside here: this is one of the main reasons we do Feldenkrais therapy with Charlie–it was recommended for this very issue.

Charlie has always struggled with his eyes. For a long time, they weren’t super-useful and even now, he often listens instead of looking.

In the last year or so, I’ve been working with him on smiling on command. Sounds easy, but there are a ton of facial muscles involved with smiling. He smiles spontaneously–it’s the other way that’s work.

But he’s got it! If I ask him to smile for the camera, most of the time he’ll comply with my request. There’s just one tiny issue. . .

Yeah. . . gotta work on the eyes and the smile at the same time. But you know what? I think that eye/smile combo is pretty dang cute.

I had fun with this last time, so here we go again–all photos are from last week.

I picked up four boxes of peanut butter Girl Scout cookies for me and one box of Thin Mints for the Husband. His was gone in a day. Mine are almost gone. It’s a good thing they only sell these one time a year.

The twins and I taking big brother Charlie to Feldenkrais therapy in the Quarter. You should see the looks I get when I start hauling two babies around there–not a lot of children in the Quarter and even fewer twins.

Hubby cooked! He used to cook all the time, but now he’s really dedicated to his position as a work-a-holic, so it’s a rare occasion. It’s an enjoyable one, though.

Hubby’s brother has moved back to town. He’s in the process of job hunting, so I immediately pressed him into service as a “nap creator.” Basically, he comes over, and I take a nap. Best. Idea. Ever.

A rare date night. Out on the town to hear Ira Glass of NPR fame speak live. Hubby gives money to public radio, so we got to go to a reception beforehand with food and a chance to shake Mr. Glass’ hand as well.

The twins. Carefully studying a toy that I pulled out from under the bed. To them, that’s the same as new. They’re in their classic roles–Louis curiously exploring while August looks on.

Big Lou in the bath. He’s decided that there is nothing better in the world than to roll over in the tub and kick like a mad man. There are no cute pictures of August in the tub because he has decided that baths are the work of the devil and he screams the ENTIRE time he is in there. I’m becoming the Queen of the two minute baby bath.