he is the best

This blog must sound bi-polar, LOL . Today though I am ecstatic by how Liam is doing after spending an entire weekend with daddy. No ripping or biting: just happy dances, huge laughs out of blue, and rolling with the punches better than I have ever seen him. He wanted a "red juice" (vitawater) from the store, but we had just bought a bunch from Costco. So we said NO. He put it back on the shelf, and said "Liam have red juice home." He is full of smiles, asking for hugs and squeezes, spontaneously saying I love you's, concerned about Audrey and Aedan when they are sad, starting up conversations (last night " I want to go to school tomorrow!" me: "Why?" Liam: "To see the girls." me: "What are the girls' names?" Liam, after a bit of thought..."Ashley and yellow sunglasses girl.") His eye contact is direct and clear, and he seems so comfortable and content in his own skin. He was playing with kids' at the gym (not just the girls) and answering "yes" and 'NO" when kids his own age asked him questions. When I see this kind of progress, I thank God for special ed teachers who believe in him, and for those who give him a chance to be himself. Life is good.

Streaking, ripping and biting - oh my

I hate to only post when I have a rough week, but that's just the way it goes, seems like. Brendan has been working very late nights due to lots of upheaval in his office, client issues, etc., so it seems like a longer week than usual. Highlights include:

Liam on a RIPPING frenzy. He ripped two of his new "Friday fun night" spongebob books, as well as several papers at school. A breakthrough though: right after he ripped something for his new Hab worker, he looked upset and said "Oh no mommy's gonna get mad" and put himself in timeout. Progress? You bet, since he demonstrated awareness of his naughtiness. I think he rips due to being frustrated, and without having the necessary words, he rips to let that frustration out. Working on setting up a "ripping corner" for him, like his teacher started to do at school.

Today I found a note in his backpack from his teacher: again, due to frustration, he bit another student on the arm at the end of the day. Hence his talking about "Did you bite? Yes, no Liam no bite" in the car to and from swim lessons. Wonderful.

Aedan STREAKED through the gym day care today; I had just gotten into the shower after a run, and I hear one of the teachers calling my name with a "Aedan stripped off his shorts and pullup and is running around laughing, naked." Apparently they can't even touch a kid enough to put a pullup back on, due to regulations of some sort. So I sudsed off, threw on my dress and a towel over my sopping hair, and went to get him. This apparently is one of the fallbacks to potty training using the "naked" method at home. He's rocking it though, as long as he's home, and now I have to teach him to a) wear shorts and take them OFF to pee, and 2) go in public restrooms every time.

Audrey the diva? Oh, she's been in full force. Two timeouts for back-talking (and one for hitting) before 10 am today. And no signs of slowing down, except for a few notable moments of sweet, cute girl. As I write this Liam is shrieking and saying "ouch that hurt, I don't understand" and audrey is hovering in the background. I just asked "DID YOU BITE HIM?" and she replies "No I hit him."

Time for a mommy time out...

i dont' have to do it all

my day - just one of many -

up at 6

630: get liam up

650: get liam on bus

710: starbucks

740: prep for class

8-10:15: teach

1015-1030: fill out midterm grade reports

11: get aedan from bren

11:15: bank

1130: get audrey

12: aedan's haircut

1230: lunch

1:15: get audrey's flower girl shoes

130: get Liam from school early

2-3: liam OT

315: dirty kid bath

330-345: mommy timeout

4:00: fold laundry

430: edit brendan's marketing material

5: edit blog rough draft for katie/protea

and now? dinner. find tax stuff. more laundry. arrange a sitter at the resort for our trip., email with students, hopefully go for a run.

i just had to get that off my chest.

t-thurs are so busy - no wonder aedan isn't potty trained. but it's all worth it, for liam and for the business and everything. good for the kids to be flexible and helps them appreciate being home.

may soon be working for brendan when he opens a second office in chandler. so stoked to expand the practice, put aedan in preschool when audrey starts school.

i can do a lot - but not all. never all. i wouldn't have it any other way!

Back to Life, Back to Reality

Well, spring break is over and the routine is back. We had a great time over break: lots of park time and playdates with friends; staying up late to watch TV with mom and dad; gym time and laid back fun. On Monday Liam looked at me a little confused when I woke him up at 630 for the bus, but he is happy to be back in the swing of things.

It's the end of March, but his school finally found a replacement teacher to relieve the sub, Mr. Johnson. She is a grad student in special ed, finishing up in June, and she is hosting an open house on Thurs. Communication notebook back in force...too bad this structure will last only until school's out in May, and then it's time for new transitions all over again.

Liam continues to make huge strides in his spontaneous speech. Yesterday he got home and said " I am hungry I want to eat a snack please" on his own, without my prompting for missing words. He was talking about girls playing on the playground - when I asked him questions his answering clarity was precise and focused, with good eye contact and little repetition. Example: "Honey did you have fun playing with the girls at recess?" "Yes I had fun, girls hugging on the playground with Liam go play." We're talking pronouns and prepositions, people! This is huge!

He has started private OT again, and I found an awesome center (kind of a drive from our house in Tempe, but hey - that's the story of our lives) for Hab and Respite. We are about to embark on a family odyssey/vacation to Puerto Rico for Devon's wedding, and any anxiety I used to feel about taking Liam to new places has all but evaporated. He continues to demonstrate a comfortability with himself and an openness to embrace change, which gives me great comfort and great hope.

hitting the wall

Do you ever have a day when you think "this cannot possibly be my life?" I had a moment or two of these thoughts earlier in the week, but this afternoon makes me want to go in my room, shut the door, and tune everything out.

I know why I have put off getting passports for my kids until today, the last DROP DEAD day to do it. We leave for PR in one month and I am really pushing it, getting them done in time. We waltzed into Walgreens as soon as Liam got off the bus - thinking I'd be in and out. No stroller, cart, or snacks.

Trying to get my kids to 1) sit still and 2) look squarely at a camera while getting their pictures taken is not easy. Never has been, and i don't know why I thought this would be different. The lady had to try twice for all of them - with Liam being the toughest of all. A snapshot of the mayhem:

-Aedan ran down an aisle, shorts around his ankles;

-Audrey screamed at the boys to "hocus!" (her word for FOCUS);

-Three bags of chips and three Vitawaters were opened;

-The photo clerk started to sweat and stress

-Aedan almost ran out the exit

-Audrey pulled the tags off a doll before i could stop her (while I was trying to help Liam "hocus")

-Total bill: $45 (25 for the pics, $20 for the pigpen disaster of food/drink/toys left in our wake)

Now I hate feeling like an out of control, pushover mom. I try so hard to set boundaries and rules, but the fact of the matter is: Liam has autism, Audrey can be obnoxiously bossy, and Aedan doesn't listen. He acts more like he's turning 2 than turning 3 in a lot of ways, largely because I have allowed him to get away with it.

When I went back to get the pics after gymnastics, while my throat was seizing up from stress, the clerk - a new one - started talking about how she's a special needs child advocate and has a child with a rare disorder. Why in the H, I thought while nodding politely, would she tell me this?

Turns out she could tell, from developing Liam's photos, that he has autism. I heard this and I just wanted to bury my head in the bags of chips (after eating them all). It's one thing to deal with autism on a daily basis, the struggles and successes. It's another for it to be transparent on Liam's face when he's not having a good moment - to the point where a perfect stranger looking at his pic can tell.

I am on hCG, trying to teach a course I have never taught before, write a column, and manage all the loose ends of getting ready for our trip. My house: trashed; my purse: disorganized; my hunger: intense. All I can do is take a deep breath and know that all the things that make me ME, my successes and my strengths, also challenge me to recognize and overcome my weaknesses. I am laid back, fun and disorganized...of course my parenting is going to be similar.

If I can't find some humor in these out of control moments, I may as well just throw in the towel. Audrey just came over to me with her cute and earnest face (to her credit, at Walgreen's she did get it together after my threats of "we can't go to Auntie Devon's wedding if you don't sit still and take a nice picture!" sunk in) and asked "are you okay? mom are you happy?"

Of course I am, baby. Challenged and out of control at times, but ultimately happy through and through.

"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?

"The A Says..."

Recently Liam has rediscovered Leapfrog's Letter and Words Factory DVD's...awesome, catchy (if annoying, for parents) movies to teach kids letters and reading. He mastered his abc's with them back when he was 2, and each of my kids in turn followed suit. Today I put batteries in one of their ABC toys, so Liam is obsessed with singing the song and acting out the movie.

He and Audrey were cute together, doing it through one cycle of ABC. Then Audrey started to get bored. Liam, clueless, kept getting in her face saying "audrey's turn..the A says..." - waiting for her to play along. She had enough harassment and kept running away. He'd follow, getting more annoyed.

"Here buddy, I"ll do it with you," I say.

Liam: "No mom, Audrey's turn."

Audrey ran into the kitchen, grabbed an apple, sat at the table and said "No Liam, I need a break!"

She is too much.

Liam kept on with it, relentlessly trying to engage his sister's back. I love it that he wants to play-act with her, and wait to see how it will play out.

Liam plays by himself for a while, singing the song, waiting, for Audrey.

After a while she says, "Ok sweetheart, I'm ready to play now. After I finish my apple."

Moments like these I love - to see how she is learning to communicate with Liam and find her own boundaries, even in the midst of his dogged determination to do what he wants to do.

Now she is reading her book aloud, very loudly, her back to Liam, and he keeps saying "excuse me Audrey" and tapping her shoulder. "The A Says..."

The will figure it out!

Boundaries

So, tonight I am contemplating "boundaries" and how to teach Liam this concept. He loves getting a reaction, even a negative one, and he has a hard time with impulse control. Today after being with his respite worker, he came home talking about "Alley mad" and "oh no balloon is lost." She called me later to explain what had happened: the balloon she gave him slipped out of his grasp in the car, so he was yelling at the top of his lungs for her to get it. She was driving so she raised her voice at him to stop and wait until they got home. She felt bad to have upset him; I told her it's okay - the kid has to learn!

During movie time he then proceeded to squish my squishy tummy, pull up my shirt, put his finger in my belly button, and crack up repeatedly. After tickle time was over I told him to stop - again-again-again, and he paid me no mind. Finally I had to yell at him - to which he covered his face with his hands and wailed "oh no Liam crying, it's so sad."

Sigh.

Then the word "boundary" came to mind. I know this is a hard concept for typical kids to grasp, so I can only imagine how much harder it is for Liam. Tricky as it is, it is essential for him to learn as he navigates the precarious world of school and social norms. At the mall play area, he likes to crash down the slide into other kids, and let them crash into him. His sensory feedback cries out for big movement, big feeling. He loves it. Other kids and moms, however, don't, and I have a hard time setting boundaries for him in public...because secretly I am happy to see him engage with and be interested in any kid his own age, never mind the activity he is doing.

So BOUNDARIES. This is going to be my rote speech to him for a while, until the concept starts to sink in. I want him to have friends and experience the fun of roughhousing with a playmate, but it needs to be with more awareness of what his friend likes and doesn't like, what is okay and what isn't. My heart aches to think of a potential situation where he is being made fun of because of his quirky ways. While I can't protect him from this completely, the seeds I can help plant NOW while he's in a mostly special-needs Kindergarten will hopefully go a long way towards insulating him in the future. And soon he'll learn to find his own boundaries, his own stop signs, on his road to figuring life out.

God I love my kid. :) Boundaries or no boundaries.

Intro - The Boy Who Lived

A brand-new mom, exhausted and glowing; a sleeping, content, squishy newborn. I look at this picture my mom took, me with sleeping Liam, 3 days old. Both of us wearing light blue, a color of joy and innocence. My unlined face, bright eyes, hopeful and sure and joyous. This picture symbolizes for me how innocent and free I was then – completely unprepared for the hell that was just ahead.

Liam has that same shape to his lower lip today, the same sweet spirit shining through when he sleeps. But now, six years later, I see something else in him. Not a boy “broken” or “less,” but a boy wiser-a little sadder, a little lost, but still filled to the brim with love. I can’t help but picture who the baby in that picture would be today, if fate had a different path for him. Would he have lots of friends, play outdoors in a treehouse for hours on end, make up stories about outer space to share with anyone who would listen? Would he be constantly growing like a weed, tall and thin like his uncles were? Undoubtedly he would be just as handsome, if stronger and more at peace with the world. The Liam today is a sweet soul with a beacon of energy and joy surrounding him. He scampers in the backyard, but tells stories to himself in an energetic babble. He loves outer space, but he plays with a toy rocket and stuffed animals, counting down from 10 and collapsing in a pool of giggles. He communicates all the time, but in short sentences like “Liam sad” and “kim possible gym next week” – his way of sharing his wants and desires with the world.

Liam is the same boy in that beautiful photo, but a boy engulfed in a world of autism, shortened by a kidney disorder we were blindsighted by. I am the same mom in the picture, but if you take a photo today you would see some different things in my face. There is still joy and hope, but it is cautious and more guarded. Defeat sometimes creeps in, and the smile has a weary edge to it. I have not done enough for my child, yet I have done so much.

For the past five years I have been trying to reconcile my best intentions with a parasitic malaise that lays its hands on me. I want to “cure him,” and at the same time accept and love the unique person he is: a child unlike any other, to cherish and be cherished by. I look to others stronger and more knowledgeable than me to take the reigns on his care and the administration of that care – instead of completing the journey of “mother warrior” to figure it out myself and lay my claim upon his recovery. Because if I won’t fight for this kid besides me – who is with him more than anyone else – how do we know who he will become? The light blue-sweater boy with the content smile, sleeping on his mother’s chest…confident with himself, able to find his place in the world and communicate who he is so he can soar. Or will he be a sweet, mysterious child lost in his own world: with infinite love for his parents and caregivers, but not quite able to grasp the intricacies of peer interaction and social dialogue. Or a combination of both.

I want to find the joy and hope I see in my 29-year-old self – confident in the possibilities before me, of a new chapter in my life. Not the self I am today. Wiser, sure, more patient. Sadder, yes, and more aware of my own failings and the chaos of the “special needs” world. My challenge now is to rediscover that joy and innocence in whatever possibilities exist today – and temper them with bulldog determination to DO ALL THAT I CAN to help my son’s brain develop. I have lost a lot of time, due to excuses and laziness and allowing myself to be overwhelmed. There is no time to lose in making it right to the best of my ability. Liam Thomas is the boy who lived – and I will become the mom who DID.

This is our story.