A few weeks back, a plump little robin set-up shop to raise her brood on my back fence.
She and I have had a few run-ins the past few weeks, mainly when I’m taking out the recycling or garbage. As I carefully opened the gate, she’d fly just a few feet away from her nest, keeping a close eye on me. I would reassure her, I’m just taking out the trash, lady. I would never hurt your nest or your babies.
My husband wanted to destroy the nest, but I told him it was bad karma. No way.
Well, this morning when I let my dog out, I stepped outside. The sun was shining, and the air was a perfect mix of comfort and cool, which I needed after a night of hot flashes and restless sleep. I woke far earlier than my family, and wanted to steal a few minutes writing before the house erupts with noise and children and the smell of Sunday breakfast. Suddenly, like it was out of a movie, a gigantic crow flew over my head and landed on that gate.
He crept slowly toward the nest, snatched one of the robin’s eggs, and flew away. I stood there helpless and horrified. On Mother’s Day, no less.
It was nature’s way of saying, yes: shit happens. Even to the best and most dedicated mothers. Even to the most vulnerable and unsuspecting.
The rise in autism numbers again last month gives me pause. It’s been quiet here at the blog, because I’ve considered shutting down this site, as life as changed and my time has changed. This space has been both a journey and a destination for me. I see the paths we have taken, and I know my family is here to serve others. My honesty is my gift to any family that happens to stumble upon my words. If I don’t share the joy and the pain, who will? I know a few special needs bloggers helped me in the early days, and I hope to be that to a select few.
Like that crow, our modern life and environment steals children away from what should have been: a perfectly normal, healthy childhood. It just digs deeper in me with each child I know personally who is affected. It’s not just autism-it’s asthma, allergies, ADHD, childhood cancer, speech delays and other developmental problems. It’s 1 in 2 kids now, who are affected by developmental issues. Almost every family I know has a kid with SOMETHING.
Rather than let that damn crow get the best of me and all of us, let us celebrate what is, rather than pining for what could have, should have been.
We cannot control what happens to us in life, in motherhood. We can only control our reaction.
This year, I’m finally gaining control of that reaction, and drinking in every moment with gratitude and grace.
Last week, after I picked Monkey up from preschool, I took him on a date to see Disney’s Frozen. Even packed a lunch to eat in the minivan. In ten degree weather. In Chicago, we get desperate this time of year, so it’s my version of a polar vortex picnic.
I think I cried nearly the entire movie. Well about, 75% of it.
See, I haven’t cried much in years, especially since Moose’s diagnosis back in 2011. This was the most I’ve cried, ever. Man, did I need a good cry. It was like this film struck a geyser of emotion that has been brewing for years, to the point that my 4.5 year old Monkey turned to me, and said, “Don’t worry, Mom, I’ll take care of you.” Then he patted my hand.
I’ve been the proverbial ice queen, not allowing myself the space and time to feel what it means to raise a child with autism. In real life, I am the type to withdraw and go quietly within myself. I’ve never been able to really “let it go”. By letting it go, I mean the guilt, the anger, the rage, and of course, the worry. Autism has taken so much away from our life, but at the same time, autism has given my family back so much more: a deep understanding of health, learning, education, food, unconditional love, and acceptance.
This post will be filled with spoilers, and though I’m sure since I’m so late in the game, this won’t be new to you. I’m probably the last parent on earth to have seen this film, and judging by the nearly empty movie theatre, I’d say so.
The waterworks started for me during this song, “Do You Want to Build a Snowman?” Why? The premise of the song is about the younger sister, Anna begging her older sister, Elsa ,to play, despite Elsa shutting Anna out. This is autism right here. The isolation. The lack of social interaction and engagement.
This song paralleled my boys at the height of Moose’s autism: Monkey would try to engage him constantly, and Moose would shut Monkey down and tune him out.
It was like watching the cartoon version of my sons as Disney princesses.
For me, it was heartbreaking watching my sons struggle with the most basic forms of play. Monkey wanted to connect with his brother, but Moose didn’t know how despite years of intervention and “thera”pay”.
Like all autism siblings, they never give up. They see the beauty inside of their brothers and sisters. They persist and persist. Now, nearly three years later post diagnosis, the proverbial break appears in the clouds.
Moose is functioning better each week. He engages with his brother. I even watched them wrestling in the snow today. Sure, they are not running about playing superheroes, but I’d say, it’s on the horizon.
So, after the movie began with that snowman song, I of course, dusted off my analytical skills during the rest of the film. I’m sure this could be applied to any marginalized population: special needs, LGBT, etc. But, frankly, for me, Frozen was a film about acceptance. Learning to master your gifts, despite being outside “the norm”.
Later in the film, the song “Fixer-Upper” had me thinking about therapy and autism. Anna meets a character, Kristoff, who is “socially impaired” and would rather talk to his reindeer than real people. Again, this song highlighted an autism struggle for my family: choosing the best for your child. Even if people are outside the biomedical/homeopathic/nutritional realm of helping autism, most families do try some sort of therapy to “fix” their child be it speech, OT, PT, ABA, RDI, SonRise, Floortime, etc.
The message of this song, is that, the only thing that can fix people is love, which is in line with the type of “therapy” we’ve been doing the past few months. Simply, spending quality time engaged with our child rather than having a parade of therapists in and out of our home.
An autism diagnosis doesn’t mean life without a childhood. Which in some families, it becomes a hectic nightmare of therapy to therapy. We lived like that for years with little improvement.
Now, life feels like life. We can breathe. Go on playdates (despite the fact I hate that term). Go to movies.
Now, we bring Moose to community classes. We take him out and about. For years, it was easier to avoid the tantrums and meltdowns than to face them. Now, that stage of autism is past for us, and he’s a joy in public. The hardest part of his autism was in the 2-3 year old range, and today Moose is happy-go-lucky most of the time. Despite attacking the treasure box of lollipops at Trader Joe’s, he is a sweetheart.
Frankly, this “Fixer-upper” song made me realize my approach to therapy has changed. We can’t afford another thing at this point. It’s PDI: Parent-Directed Intervention (my term for it), but the basis of it is love. Maybe one day, I’ll write a book, and change the face of therapy for our kids.
Not $150 per hour and data sheets. Love. Engagement. Unconditional acceptance.
That’s the message that Frozen gave me in the end: finding it in your heart to accept and love. On those down shitty days, and yes, in the autism world there are a few-you may find me and my sons doing our “music therapy” by spinning and laughing to the Frozen soundtrack.
Finally, now, I’ve really let it go.
Something happened while watching that film, a tide shifted in me. I can’t quite explain it, but I realized that my negativity has held my son back.
By me letting it go- letting go of all the anger, rage, guilt, and worry: my son will be able to truly thrive.
There’s nothing more in this world, that I want right now, to hoist you on my shoulders and carry you to the finish line. Nothing more in this world. I know the pain, the anguish, the worry, the late nights spent on google, I know it all.
It’s an ugly, raw, and shitty place to be. You are in the sewers of parenthood, looking up at all your friends and relatives with their perfect lives and happy birthday parties and easy days, and you are all like: where the hell did we go wrong?
Sure, there are a lot of wrongs that got you here. In this place. We all know what they are, so I won’t go into the gory detail, for now, I want to focus on the HOW to get you out of here.
I want to tell you there’s a magic pill or therapy, but that would be all wrong. Sure it’s some of those things, but not ALL of the things.
If my Moose, the most textbook case of autism, can transcend the prognosis of his asshat developmental pediatrician: YOU CAN TOO.
He is potty-trained.
He knows words.
He engages and shows emotions.
He is no longer a textbook case of autism, but a case of autism in remission.
You will fight each day, as you will have to. Some family members and dear friends will remark, I don’t know how you do it. You get up, put your boxing gloves on, and fight. Some days you will drink wine and coffee. Some days, at the same time. You will fight insurance. You will fight school districts. You will fight and fight and fight until you realize the biggest fight you are fighting is the fight within yourself and your expectations of your child.
Your child is here to teach you that there is no recipe for the perfect child.
You will find love in their many challenges.
In the bite marks on their teachers’ arms.
You will find grace at three a.m. when they laugh and jump on their bed.
One day, you will wake up, far too early, and look in the mirror.
You will see bags under your eyes, new grey hairs forming, and see the beauty of yourself in that fight.
After a few weeks on the dark side, we are seeing the proverbial silver lining with Moose. November was a month of bad reports, biting, and hell. After using this blog lately as a vessel for the ugly side, I had to share not one, but THREE great inchstones today.
At this point, I may need another unit of measurement.
First, up…Moose wore mittens and a hood today. No small feat for a boy who takes eons to readjust to climate change, which here in Chicago, is early and often.
So, hooray for kicking sensory processing issues!
After school, we deviated from routine to go right home for therapy time, and went to Whole Paycheck for a few things. Said deviation often leads to tantrums from the dark side, but not today. Moose happily went with the flow, and pushed his brother in the cart! He put food into the cart! He even loaded groceries on the belt!
I mean…the heavens are opening people. When the grocery clerk ask me how my day was, I answered honestly, “One of the best days ever!”
I shit you not. I felt like I was walking on white puffy clouds.
Then, we get home, and start our home therapy. He works with me! Makes eye contact! Writes his name! He even read a sentence in a book.
Whatever angel has possessed my son, I hope he stays for a bit.
I will try to find the good in today. Because today has been a today, where seriously, I give up. Moose bit me four times today. Four. In public. At a trampoline place on special needs night.
I’m the kind of tired today that sleep can’t fix.
He bit his teacher last month.
He has entered a new phase of anger and chewing and biting and it feels like I have a one-year-old again and you have to worry about his eating the ornaments off the Christmas tree and small toys.
I want to buy Monkey the big boy set of Legos in the blue bin for Christmas, but part of me is like keep the Duplos for another year, because the 6 year old might eat them.
Today, I will tell autism to fuck off.
Today, I hate autism.
I hate that it is almost impossible to take my children alone anywhere without epic tantrums and exhaustion. I hate that anger is pouring out of my child and into his teeth.
I do not hate my child. I love him above and beyond all else in this world. Lately, he has been sick. He is reacting. I get that. But being bit four times in one day, is well, enough to make you want to quit.
Or at least fantasize about leaving for a corporate job downtown far away from the reality of making lunches, school pickups and drops off, the fights, the refusal to comply and follow directions…and then, yeah, growing a small business in between all the daily chaos.
So, despite all that…I choose to focus on the small good of today. The only good moment of today:
My four year old Monkey, while we were driving to a warehouse of trampoline kid heaven late this afternoon, spelled “w-h-i-t-e” “c-a-s-t-l-e”…’Mom, there’s a white castle! What’s in there? Horses?”
I have raised a child without knowledge of fast food.
So, autism, you may win today.
But, after a good night of sleep, I’ll be back to fight you again tomorrow.
So, much in life, is our reaction to things. How we approach the adversity, how we respond to the deaths, the diagnosis, the job losses, the financial hurdles, and the heartbreaks is one and all the same.
You can let these challenges destroy you, and at many times in my life, I have allowed them that power.
Maybe it’s been a few years deep into this “new normal”. I look back on the earlier years when Moose first started early intervention, and all I felt was Worry and Desperation and Fear and all those other shitty things when life throws you a curveball and a quick punch to the throat.
Perhaps it’s age. Perspective. Seeing my son is more than a word. A label.
He always has been, but so much of my energy was in the wrong place.
I was operating out of a place of fear, not of love.
Now, the fear is gone.
That’s what the change is about now: it’s about finding the calm, the patience, and the hope. It’s tuning out the negative, and counting blessings. Focusing on the good in every day. In the words of Anne Lamont, Bird by Bird.
It’s not the diet. The supplements. The therapy. The forms. The IEP goals.
Back when I was teaching I had some tough kids. Kids who brought weapons to school. Kids who sexually assaulted other students at recess. Kids who would just sleep through class and never turn in a single assignment. Having to call DCFS.
Those were my years teaching here in Chicago.
When I ran a small tutoring business when my sons were very young, my students were tough cases, not behaviorally, but academically. Kids who simply couldn’t comprehend the material. I loved the challenge, breaking lessons down into bite-sized pieces and seeing the stars go off in their heads.
Now, with my sons, I’m realizing that the ways I’ve been taught to teach, and the ways in which we define learning and behavior, are all inside out and upside down.
Moose turned 6 last month. He has known his letters and numbers and sounds since 18 months. No joke. When autism set in, he lost his ability to communicate with us. His IEP goals at school are very basic: recognize some sight words and demonstrate understanding of one-to-one correspondence of numbers 1 to 10.
Problem is: not meeting his goals. He can’t attend to tasks long enough to sustain significant learning and attention. When we practice sight words at home, I use every “sensory-based” approach I can…and still, nothing is sticking.
I mean nothing.
We write the sight color word “red” out in sand, and when I ask him the word he tells me “r”.
For every word we’ve practiced other than his name- all he sees is the letters. His language is still basic at best. He isn’t conversational yet. Everything is requests.
But, I am grateful for each and every word uttered from his mouth. Truly, I am.
It’s just we are at a plateau with his language and learning.
At yoga last week (yes, I’ve finally returned after a 6 month hiatus-it kicked my ass), my teacher said something along the lines of this:
Here, at the estate, it’s more like a cha-cha slide drunk at a wedding, than at some hipster coffeebar with inspirational quotes.
I’ve had my fair share of set-backs in this life, and I’m learning a great deal from my children. I am. We’ve taken more than a step back, but more like a major detour and then we got a flat.
I thought having a fancy pants teaching master’s would prepare me for teaching the two most important “students” I will ever have, my sons. But after seeing Montessori schools last month, I’m still in a place of purgatory.
Meanwhile on the sunnyside of child-rearing, Monkey, my 4 year old is starting to read without any direct instruction. Sure, I’ve close-captioned any PBS shows they’ve watched for years, and have read to them incessantly since they both came home from the hospital, but in terms of “let’s sit down and learn to read!”…it’s pure osmosis with this kid.
I was exactly the same as Monkey. Reading was something I was just always able to do. My mother read to me, pointed to the words, and it all just sunk in without fanfare or flashcards by age 4.
Any free moment that Monkey has, his nose is shoved in a book. He even brings them in the car now. For fun. But, his fine motor skills are incredibly weak, and he is resistant to having me help him.
So, again, I’m stumped.
Parent-teacher conferences are next week here in Chicago, and frankly, I’m at a loss. This is the first time in my teaching career, that I am truly at a loss. We’ve tried every therapy and treatment known to man. Moose’s kindergarten teacher is incredible, and she’s even at a loss. Monkey can’t qualify for services with our PPO because he doesn’t have autism, and so I am left to playing Occupational Therapist at home. I’ve sat through enough therapy in the past four years to know what to do. It’s just I’m MOM, and not Mrs. So and So.
We will just keep on keeping on.
So, if any of you are special ed teachers or parents who have a child with Moose’s situation…bend my ear.
All of the worry. The dollars spent. The countless trips to Whole Foods and the farmers’ markets. The endless ruined gluten-free experiments. The prognosis and proclamations by stuffy doctors. The trying this and the trying that. And the what the hell, let’s give it our all. The let’s scale back and let it be.
Amid all the energy and time, I still deep down inside had negativity and guilt at my core.
The guilt that I was never doing enough. That despite it all…the fear he would never get better.
That is all by the wayside.
Enter an era of different hope.
I’ve released those negative feelings, and it seems we are turning a new corner.
Tonight, on his 6th birthday, my son spit in the face of his “label”. Moose opened presents for the FIRST time. He actually knew what his presents were. He blew out his candle.
And that, my friends, is the stuff of unicorns and rainbows.
The stuff I was told at age 3 would never be for my son.
Here at the estate, we don’t take NO for an answer.
May year 6 bring grace, hope, and more progress.
I’ve posted twice in one day. A world record. I’m back from the blogging dead.
So, you become a mother, and you think YOU are going to teach your child everything you’ve learned. You are the director, and they are your mere apprentice.
This young man, has taught ME more about life than I could ever teach him, and for that, I am humbled.
In honor of his 6th birthday today, here are six things he’s taught me about life in the past 6 years.
1.) You can weather anything. Whether it’s an autism diagnosis, sitting at your father’s funeral with a 6 week old baby, YOU are strong enough to deal with it all. Punch through the days, and be grateful for all you have.
2.) Question everything you know. Never take anything at face value anyone in positions of authority say: be it doctors, teachers, or therapists. Read the fine print. Then read the fine print’s fine print.
3.) Food can heal and destroy. But question this too. Research and study, use your body as your lab. If the government or marketers recommend it, it is most likely not in your best interest. Support local, organic, non-GMO, and food as our grandparents knew it. The truth is in the margins.
4.) Take the time to slow down and honor your body. Saying no to invitations and obligations isn’t horrible, it just makes you a realist.
5.) We all learn differently, on our own timetable.
6.) Health is much deeper than medicating symptoms. It’s much deeper than cabinets of supplements. It’s a quiet story in our being, written in our genes, written in our choices. We are just scratching the surface of that.
That being said, Mr. Moose, I’m proud to be your mother. I’m grateful for all that you have taught me, and continue to teach ME each day.