"Aedan get down"

I am compelled to write a quick blog about Liam today before I get the day going -

First of all, last night we did not get them gifts after date night, since Audrey's been a little greedy lately. Liam just held my hand and said "next week Mickey mouse clubhouse movie" and walked to the car, no fit or frustration or tears.

Then this morning, Aedan climbed up onto the toyshelf in the playroom again, and Liam came running in to tell us. "Oh no Aedan, climbed up. Get down." He held onto Brendan's hand and followed him into the playroom to show him. This demonstrates to me an awareness of his brother, and recognition of how unsafe he was.

The boy's cognition skills are improving, and socially he is making huge steps in noticing his siblings and what is going on around him.

A small victory to start the weekend! His progress makes my heart shine. :)

rough night

Sometimes it is so tough parenting when you child doesn't communicate well. Yesterday was a rough day for Liam and me, and today I am feeling very down about it.

I met with his principal this week, and expressed concerns about Liam's learning environment. We don't know how he is doing in school; some days he comes home hyper and rowdy, other times completely in his own world. There is a sub in his class after the teacher up and left, and they are actively pursuing leads to find a permanent replacement. In the meantime I made my needs clear and instigated a communication notebook going back and forth from class to home.

I was frustrated to read that Liam is practicing upper and lower case letter, and counting/matching to 20. Now, the child is very smart. He has been able to identify letters, both cases, since he was 2 and a half, and he can count past 100. Just because he doesn't communicate well and is autistic does NOT mean he cannot be challenged academically. I wonder if he acts out because he is bored and not motivated to learn. So I wrote today in his notebook that yes Liam knows his letters (this is not preschool!) and is very ready to start reading, spelling, and doing math. I get so frustrated with the "wow he's smart" comments I get sometimes...like this should be a newsflash for a child with a unique mind who learns differently from "typical" kids.

His district believes in inclusion ultimately, which is why I was so excited to move and have him placed in a better environment. So far, though (possibly because there is not a permanent teacher) I have my doubts about Liam excelling to his potential and being comfortable enough to integrate with his peers. Then I have to ask myself: am I rushing him? am I asking too much too fast? There are no clear answers, and all I can do is trust my gut and keep making my requests known.

Liam resisted his fish oil supplement yesterday for the first time since he started receiving it again after a long break. He fought and fought me, clamped his jaw shut, spit it out so it hit my eye. All these memories from his babyhood (blood draws, feeding tube, holding him down, vomiting) came rushing back and it took my breath away. Part of me wants to wait until he's receptive again to start the supplement; a big part of me knows he NEEDS it for his brain development, and he has to just deal.

Then he bit Audrey on the cheek, for no apparent reason, so I had to get tough, yell at him, and even spanked him. Now I know that not all kids needs to be disciplined like that, and I only reserve it for special occasions such as physical violence when HE KNOWS what he's doing. I could tell by his face that he knew that was wrong, which is good to see that recognition, but Bren and I both felt that he needed to be punished.

He cried and cried and started spouting gibberish, completley away from the subject at hand. He kept talking about Alley, his hab worker, crying and getting mad, on the phone or something, over and over with his hands on his cheeks as big tears rolled down. I didn't want to comfort him right away after punishing him, but my resolve just vanished when I saw that reaction. I am actually going to call Alley right now to see if something happened - and now Brendan and I are questioning the wisdom of letting him be along with a hab worker, when he still can't communicate something wrong effectively.

So now I am doubting myself, and what the right course is. Do I trust the system and let him be independent with an adult, who is supposed to be working with him? Or do I take the harder course and either a) give up on Hab (I have yet to have a productive experience with it); b) set tighter guidelines for her, like requiring written feedback from each session; or c) only let him work with her in my sight. Which defeats the purpose, since where I am Audrey is, and she tends to take over.

Where is my opening of the heavens and ray of wisdom to light the path?

He went to bed upset still, I went to bed guilty and a little lost, and I plan on cuddling him when he gets home and promising that today will be a better day.

Refinement through Fire

I think I will share Liam's birth story tonight. I am having flashbacks to that day, so here I go to write the story down. It is, after all, where it all began...Liam's life, the beauty and struggle of it.

I had never been so healthy as I was during my pregnancy. Even though I gained 50 pounds, I was eating all organic, taking some high quality prenatals, walking every day, and taking yoga religiously. Not only did I feel fantastic, but I looked great. Pregnancy seemed to become me.

Liam's original due date came and went. We were seeing a bit of a "quack" naturopathic doctor, but we didn't see that at the time. Brendan had just started medical school at Southwest so were were starry eyed and fancy free about the whole idea of nature cure and natural birth.

Throughout the pg, Helen never gave me an internal exam. The due date was set and the baby was big, but he was comfy in there. Halloween - the hottest on record in Phoenix for, I don't know, fifty years or something. I was getting uncomfortable and walked with Bren and Kia every night, jumping up and down to get things rolling.

Two, three nights I woke up in full-blown early labor, only to wake up still pregnant and well rested. Damn.

On the evening of November 8th, 10 days past his due date, labor started for real. Everyone says "you know when you know" but I had been jaded a few times, so we took our time in calling Helen. The contractions were not letting up but coming on strong, so we finally called her and started to set everything up.

I cry when I think of the beauty of that night. At my baby shower everyone gave me a special candle to light during labor, so I arranged them all around our little apartment, saying a special thank you to each person's gift. Brendan blew up the birthing tub, valiantly warming up water to put in there since we were so broke we couldn't afford to buy the fully electrical one.

My "doula in training" and friend Lori showed up, and she in her hippie glory helped set the stage. I remember lying on my birthing ball listening to Enya, looking at Bren's excited face through the candle light. Helen arrived and set all of her supplies up; the mood was calm and exactly as I had pictured it.

I don't remember exact times. In the tub, labor progressed beautifully to the point where I was directed to reach up and feel his head. So much long soft hair; the thrill of that first touch between myself and my child. We thought this is it - we're getting close after just a few hours.

More essential oil in the diffuser...moving into our bed. Brendan labored with me and it was one of the sweetest times we've had together: intimate and playful and extraordinary. The contractions hurt, but it was a productive hurt with the promise of infinite and imminent joy.

Then something happened. All of a sudden, it started to hurt a lot more and much more frequently. Brendan woke Helen up (she had been snoozing on the couch - this was probably around 4 in the morning) and she came into the room. His head was in the same position and the water hadn't broken, although the contractions were coming faster.

Gone was Brendan's playful tone. I sensed an urgency in his voice, and then caught a glimpse of Helen consulting her birthing book. All of a sudden this wasn't remotely magical anymore.

There is a gap in time at this point, since I forever lost a few hours. All I know is that all hell broke loose as I went into "transition" at 9 1/2 centimeters and then HE GOT STUCK.

I remember how daylight drifted in through the windows as I panted in the birthing tub - contractions hitting me every 2 minutes apart like dynamite exploding my lower back open. I had to hold onto both Bren and Lori with all of my might, one arm over each of them, fingers digging into their flesh, as I screamed in agony. It literally felt like my ribs were splitting and my low back was being ripped open. This went on for hours, with Helen checking Liam's heartrate every few minutes.

Her face awash in dread and resolve...me begging and then screaming for drugs, to go to the hospital...her voice, clear as a bell, saying "Get it together. You can do this. It is too late to go to the hospital, you are going to have this baby."

Resolve washing over me, determination and grit as I mustered everything I had. It was an out of body experience at this point, as I felt like I was going to die in this hell of pain with no end in sight.

Somehow Helen constructed her birthing chair. There is a photo of me on the Laz-e boy, right before I transferred to the wooden chair. Hanging onto Brendan listlessly, my fists clenched. A void exists in my memory of how it actually happened, but I remember Helen's voice through the haze: "His head is blocking the water - you have a lip on your cervix and you aren't able to dilate all the way - I am reaching my hand up to pull that lip back."

White pain, total agony, some godawful sounds, a flow of water, then release - blackness, white light, and before I know it there he is - a big, slightly blue baby with a red face and a ton of dark, long hair. 8'12 ounces, 21 inches long, beautiful and strong and sure. Noon, 11/9/2003. 12 hours of labor.

I only remember these first minutes from the video Lori took. Otherwise, it would be lost to me, and for this I am eternally grateful. I knew what to do - I cooed and whispered a welcome, and held him surely in my shaking and exhausted arms. I was beautiful and sweaty and SURE in my motherhood, even when I was virtually unconscious from the pain and superhuman effort.

Trauma from that birth stayed with me for weeks. I woke up a few times screaming "HE'S STUCK! HE'S STUCK!" even though he was right next to me in his co-sleeper, an alert and sweet infant. With only a little tear from labor, I recovered quickly and felt like such a warrior woman. I thought I could do anything after a natural, complicated home delivery - one that, without a doubt, would never have been allowed to go that long in the hospital. He would have been a C-section baby for sure.

This birth symbolizes so much of what was to come for Liam, for me, and for all of us. Beauty and trauma together, refinement and growth through fire, pain, and struggle. Post-trauma that I think in some ways I am still healing from - a long journey through the unknown that ends the same way. With me, knowingly or unknowingly, being a mother, and giving comfort to my child when he needs it the most.

cure?

Talking with Brendan tonight, I realize how difficult it can be, navigating the autism community. Parents are hit with so much information - the latest nutrient, the newest therapy, try this, see Dr. So-and-So who's all the rage, you haven't tried this yet?, cure, cure, CURE. It's hard to keep track of, and can be in turns inspiring and frustrating. DAN doctors cost a lot of money, and there are promises of CURING autism to back up the hype and the hope.

Don't get me wrong: many many kids are "cured" from autism through relentless pursuit of new therapeutics, and lots of doctors have found amazing research to support the search for a cure. Many kids have been "saved" and helped. I read these amazing stories and I cry and cry. Happy for the families, ashamed at myself for not being relentless enough, hopeful for the future, and then disappointed in myself all over again.

But then I think about the polarization of acceptance and cure. Of course we all want our kids cured from autism, from the frustration they must feel, from the hardship they will face trying to live in a "typical' world. But if there is such major emphasis on curing the disorder, what is lost in the day-to-day interaction between parent and child? Some families are hell-bent on hours of habilitation, ABA therapy, biomedical interventions, etc. etc. and monitor the kid relentlessly to track progress, setbacks, etc. I am all for this, but what about accepting the kid's quirks? Instead of thinking "bad" and "good" days - setbacks and progress - "regress" and move forward - what about simple questions like: is my kid happy? is he more open to new routines? have I told him i love him enough today? given him enough hugs to let him know " I am happy to see you - I missed you" when he gets off the bus?

That's what I did today. Liam's face lit up when he saw me, walking down the steps from the bus, so I picked him up and buried my face in his neck. I told him how i loved him, how glad i was to have him home, etc. he kept saying "hi mommy" and patting my head, held my face back and looked straight in my eyes with a big smile. I felt my heart lurch with love before i let him go.

And then tonight his routine was shattered: we went to Baja Fresh instead of the usual Friday night "date night" routine of Chipotle (which we have been doing every Friday, give or take, for the past four years). He tolerated it like a champ. Then we went to the mall play area, as per usual, and he tried to kiss a girl. Had a blast. Usually we end the night by getting him a Disney book or movie from Barnes and Noble, to add to his collection.

Well tonight, I thought that we should break up this routine, so he doesn't start to feel entitled to a new gift every single week.

Poor kid. We walked through that store to get to the van, and he just lost it. "OH NO RED DISNEY BOOK! I NEED THE RED DISNEY BOOK!" over and over, a look of pure sadness on his face. He varied his tirade out a few times, with "time for school tomorrow" and other such things - then he'd go back to "red disney book please." It was heartbreaking, and then I started to question myself all over again. Who cares if he feels entitled: it's not like he is obsessed with material things for their own sake - it's part of his routine, his comfort. Brendan was right in saying how Liam was naming things like "first school - then speech - then swim lessons - then chipotle" etc etc to try to reestablish control over what he wanted. We stuck to our guns, and he went to bed sad, with the "green disney book" from last week next to him.

It is so hard to navigate: establishing discipline and limits, getting him used to "new"routines, and also letting him have his quirks and comforts. I am proud of him for how he adapted tonight, and I willed myself not to question my decision OR get upset about how he is not yet "cured" of his tendency to fixate. This is HIM, from his loving cuddles this afternoon to his sad outburst tonight.

I hope to one day find the balance between hope/cure and acceptance, and not limit myself to always thinking in absolutes. I believe that with love and guidance, diet and nutrients, and both of us trusting our instincts, Liam will continue to thrive and find his own place. And forgive me for muddling my way through it.

telling my story

Today I was at the park with a new friend I made through Audrey's school. We were casually talking about kids, babies, life experiences, etc, and somehow the subject of health came up. I heard myself very casually breeze over Liam's history and it kind of caught my breath.

There are many "nutshell" versions. The bullet point - the extended bullet point - the "other players" bullet point- the 300 word version - the 3 to 5 page paper version (with extended family heartache included) - the bottles of wine and talk for two hours straight with lots of tears WHOLE story.

Not sure which version I will end up sharing on this blog, but right now I'll give the bullet point that I gave my friend.

-born a big healthy baby

-started to show signs of slow growth

-same weight from 2 to 4 months

-failure to thrive

-hospital - diagnosis of bartter's

-one month at phoenix children's hospital

-daily blood draws

-high calorie formula

-food journal

-severe milk allergy, vomiting for months

-hospital round 2

-feeding tube

-teeth extraction at 20 months

-slow speech

-slow growth

-autism

That's a lot to cover with a casual acquaintance. Each of those bullets include heartache and grief, and a whole range of emotions. Resolve, resistance, anguish, determination, denial, acceptance, love, letting go, independence, patience, humor, and strength. I realize how I need to tell this whole story, piece by piece, so I can become more whole and really discover how to become the best parent that I can be.

I realize too how resilient I have become, how many skills I have learned, the peace I have found through this journey. How lucky I am to have Liam, how much of a treasure he is. And kudos to him for overcoming so much so quickly, with a sweet attitude and open arms.

I'm typing this as he keeps coming over here to say "hug you mommy" and "i love you" and recite the months of the year for me. "December is over - January is over - now it's February 2010!"

So what if he wasn't able to tell me about the field trip today. I asked him if school was fun and he said "YES" with a huge smile on his face.

What else do I need to hear?