"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.