October 2005:
Slowly, I trudge up the handicapped ramp to Casey’s Early Intervention Preschool. At only 21 months old, he’s been diagnosed with autism and has been going to this school for a couple of months. Each day is the same. Carter, Casey’s older brother who is only 34 months old, runs ahead, I drag a kicking and screaming Casey to a place he’d rather not go. My back aches from the strain of the fight, Casey’s weight and the weight of my own seven-month pregnant body. By the top of the ramp, I’m sweating and exhausted.
We wait for the class to start with the other parents in the hall. I watch as a little girl with Down syndrome, Amanda, is carried down the hall by her mother. She smiles and cocks her head to the side to watch as Casey lays on the floor wailing. The door opens and a team of teachers and therapists usher the children in. I notice as they see Casey a look of worry and strain crosses their faces. I pretend not to notice as I carry a flailing ball of hurt and anger into the room. I do what they tell me to: I put him down, tell him I love him and that I’ll be back soon. He runs from me and hides in the corner of the room. As I try to rush out of the classroom, pulling Carter away from the mountain of toys he’s dying to play with, I notice the exchange between the therapists and Amanda. Her mother gently puts her down, and she walks happily into the classroom. They greet her with smiles and hugs and high fives. Her mom says goodbye without a fight and leaves before I can untangle Carter from the miniature basketball hoop.
We make it out of the door and I collapse onto the bench in the hall. I wait, head in my hands, and listen as Casey continues to scream inside the preschool. I think about the differences between him and Amanda. I catch myself thinking, “Amanda’s mom is so lucky.”
October, 2012
I carry Abby to her Early Intervention group language class. As I put her down, I make sure her feet haven’t slipped out of her orthotic inserts in her shoes. Her legs wobble a little bit and I help her get her balance. She smiles as she walks in and is greeted by the therapists and teachers who adore her. Ahead of us, a heavily pregnant mom wrestles her autistic son as he screams in protest. We say goodbye to our children and leave to the parents waiting room. In the waiting room, I stand at the observation window and watch as the therapists painstakingly help Abby walk through the obstacle course they’ve set up, the children waiting behind her grow impatient and they eventually let them pass so she can take her time climbing and crawling through the maze. The boy’s mom joins me at the mirror, a look on her face that I know I carried for years. Before we get a chance to talk, her phone rings and she wanders off.
We get called into the classroom for the joint part of the class. I watch as the other children run laps around Abby. When it’s time for singing time, the kids go around and sing their names. Abby rests her head on her shoulder as she watches. She can’t say her name. In the place of words is a wheeze and I’m soon out in the hall giving her puffs of albuterol as I watch her little ribs retract through her shirt in an effort to compensate for the inflammation. Her lungs respond and we return just as they begin snack time. The kids are drinking from open cups, but I grab Abby’s sippy cup of pre-mixed juice and a thickening agent that makes the consistency of the fluid resemble gravy.
I walk Abby over to the chair, and position her body so that she can sit back into the chair. She sits and slumps so far that she’s about falling off. I pick her up and adjust her at the table. Abby smiles as she eats, but says nothing. She even refuses to use what signs she knows, like “more” or “banana.” Eventually, we pull what language we can get out of Abby by doing hand over hand signs, and rewarding her when I use her hands to do the appropriate signs with her. The autistic child struggles through the transition, but eventually jumps into his seat and scoots himself to the table when he sees his favorite snack on the table. He flaps his hands as he asks for “mo crackuhs.” His mother behind him smiles and claps.
I find myself thinking, “She’s so lucky.”
Lexi Mag 
It’s bittersweet, isn’t it? Some days I think every one else is so much luckier. Then, my son will do something pretty spectactular, you know–for him, and those thoughts vanish. Wishing you much love this Valentine’s Day, my friend.
Thank you. It’s true. I hope this conveys, too, that I am lucky on both accounts. My kids have their strengths and their deficits in different areas, but I am a lucky mom.
I know you’re going to catch hell for this post. But it’s good. I love the kind of…”surprise ending” if you will. You caught me off guard. It’s well done.
Why would I catch hell for this one? I hope I didn’t say something offensive.
You will NEVER catch hell from an opinion worth hearing if you are writing as authentically as you did here… this is life. This is reality, and real parenting. Not every thought is rainbows and glitter. It’s a daily struggle with flashes of tremendous reward and intense love. This piece is so very human. Thank you for sharing it!
Wow. You know, I guess I never really thought of it but I imagine every mom/dad in that EI room has had the “s/he’s so lucky” at some point. Despite having a child with autism, most of my EI memories are like those you shared with your daughter. Little Miss could not walk, would not eat, and could barely sign when we started EI playgroup at 18 months (how’s that for “a little bit of everything”?). I totally remember watching playgroup peers run circles around Little Miss and gobble down plates of snacks while we struggled hand-over-hand with the sign for “please.”
I guess it’s those moments that remind us how much our kids are capable of growing and changing — those rock bottom “she’s so lucky” moments are the ones that help us lift ourselves up and help our kids to see what each of them are capable of.
I feel like both times, I was seeing what the others could do, and what my kid could not. Writing this out helped me to see how lucky I am on both accounts.
When Casey started EI at 18 months, too, he had only been walking for a month and had lost all verbal abilities besides the word “more.” They told us he might not ever talk. He’s now in third grade in a mainstream class (with a lot of support) and won’t quit talking. It’s amazing how far he’s come.
What an amazing post. The juxtaposition of the two experiences took my breath away. Thank you for the perspective.
Your writing gets me right in the gut.
I wish I knew the secret for how you put words together so beautifully. This is excellent writing, my friend.
Right back at you. Your writing amazes me.
Thank you for sharing this! I pray that Abby makes it through the winter without anymore hospital visits. My middle one suffers from exercise and allergy induced asthma. His breathing has truly scared us this winter. It’s so hard to watch and wait.
Tears.
You brought me back 4 years ago. I was that pregnant mom. Then fast forward to 2 years ago. Back again at EI, with my third.
I can’t formulate any more of a comment through my tears.
I hate it when I make you cry. I do not like going through all of this again. i thought I was prepared for how hard it would be. I was not.
We have parallel lives I think. Your pre-school experience with Casey takes me back. There was a boy there with Down Syndrome, I felt like his Mom felt sorry for me as I chased a squealing John up and down and in a circle. Then after Madeline I started thinking I was lucky he “just” had autism. Thank you for sharing. It is shit up to your elbows hard work, you are a class act, one tough Mama, even if you don’t feel that way!
Thank you. If you saw how I look right now, you’d know I was shit up to my elbows in hard work, but not classy. Ooooh boy. And we totally live parallel lives. It’s amazing that there are so many of us out there.
Your last line… “It’s amazing that there are so many of us out there.” Amen. (And nice to meet you.) 🙂
What a great post! I have also shared this thought…I think I even said to Jim one day leaving daycare (re: a little girl with Down’s Syndrome) how her mom had it easier because her daughter would eat. I remember Jim just looking at me and saying “really”? Now I have a different perspective, but now I am on the other side. I have parents who will say, “You are so lucky that Lily can talk”. I am thankful for that…but i also know that there are kids in her class that can’t speak, but they can feed themselves, write their name, use a iPad or keypad. I now just say it is all relative. We all have our stuff, our fears, and sadness, but I do take time to appreciate what I do have in Lily…
I am just getting caught up on some of your posts…I hope you are all doing well…think of you often!
Wow.
This is my favorite post you’ve written.
Excellent!! I could picture those moments perfectly 🙂
And then there’s us moms who have the kiddos with the dual Ds/ASD diagnosis – we just throw our hands in the air and
sigh – haha!!!
I was so worried about a dual diagnosis with Abby. When she was born, we said, “Well, at least it’s not autism” because things had been really hard with Casey. Then when we learned how high her chances were of having both…. jeez. I just could not imagine.
So, SO well written and something I think all of us that have children with medical/special needs can relate to at some point. Thank you for putting into words so many different experiences that parents like us go through and don’t have the gift for articulating so well!
Nailed it! I can’t even count how many times I have thought “they are so lucky” and realized that someone else was thinking the same thing about me and my kiddo. This whole special needs parenting thing is HARD. Great post!
All I have to say is this is beautifully written and expressed. I love it.
Wow! It is CRAZY interesting to read this. My daughter is, like, BOTH these kiddos…only, much more like your autistic son. Georgia has a dual Dx of DS-ASD and I have SO had the experience almost to a TEE like the one you describe with your son. Meanwhile looking at all the other kids with “just” Ds going…”What is going on with MY child???” and then looking at all the kids with “just” Autism and thinking “why can’t my child keep up on the obstacle course??”
Wow. You are great at writing about this. Thank you!
This is such a poignant reminder that we can always only see the outside of what other people go through. Comparing it to our interiors is a losing proposition. You have a way with words, friend.
I have those days too. Where I look at the other kids in my daughter’s FLC at school and think “Those moms are so lucky. At least their kids can see.” Or, “at least their kids aren’t autistic.” But then other days I look at her and realize how much joy she has brought to my life and I know how lucky I really am. It’s a roller coaster ride.