It’s graduation season. Big celebrations sometimes stir up big feelings, and this year they kinda snuck up on me. My middle child, Libby, graduated from the 8th grade this past week. She looked forward to it for months. We bought a pretty new dress and- yes, I totally got suckered- two new pairs of shoes. That way she could wear a cute little wedge (she called them her high heels) for the ceremony and a fun pair of flats for the dance afterward. We curled her hair and painted her nails. She posed for pictures and hugged her friends and teachers and had a great time.
And then. There was the dance after the ceremony. The first song was for the graduates to dance with their parents and then we were all shooed away so the kids could party down on their own. As Libby and I danced, it all hit me. Hard. And I told her so. And we both ugly cried for a minute or two. You see, when Libby was very small, I knew there was something not quite right. I knew it at age 2, and a little more each year after that. But it took three evaluations and another 7 years to get the diagnosis: Autism and ADHD.
It’s funny, the depth of detail you can recall sometimes. I remember driving to the appointment where I’d get the results of the many days of testing she had undergone with this third hospital. I wasn’t sure what to expect, really. After all, I’d been through this twice before and felt the anger, confusion, and rushing relief when the previous two hospitals said there was absolutely nothing wrong with my precious baby girl. But then I’d get that gnawing feeling again and make another appointment. Would this visit be the same as the others? Was I making things out to be worse than they really were? Late on a Friday afternoon, I waited alone in a quiet room, wondering if this day I’d be leaving a different person.
As it turns out, I did leave that room a very different Mom. There, they told me the words I’d been both pursuing and dreading for so many years: Libby had Autism and ADHD and some accompanying anxiety. But they didn’t stop there. They said that her diagnosis required Libby to be medicated, immediately and for the rest of her life, for her to have even a chance at normalcy. The implication was that I’d be doing her a great disservice if I didn’t medicate her. They also said that I should be prepared for Libby to live with me through adulthood and that she’d need many types of therapy to help her with life in the big world. And then they said it was doubtful she’d be successful in an age-appropriate classroom at school. That she’d need a great deal of “pull-out services” and various occupational therapies to help her connect appropriately with others and progress through school cognitively, developmentally, and socially.
All of this I half-expected. And yet, on the long, quiet drive home I completely and totally lost it. I still remember the details of that drive. How the trees looked, and the driving rain. No matter how you plan for it, and even pursue it, hearing that your child simply isn’t going to do normal things the way normal kids do them is soul-crushing. I still remember how much my heart literally hurt for days and how very alone I felt with the news. It’s not the kind of thing you send out announcements for. My very closest friends were waiting alongside me to get this news and I remember how often they checked on me that weekend to see how I was handling the diagnosis. There was no handbook for what to say or do.
After I let myself be sad for a few days, something happened in me. Without really choosing, I chose to fight. HARD. And I began preparations for a long and difficult battle that I knew might be fruitful. And I knew might not. I readied myself anyway. I researched for months (and really, have never stopped since). I bought dozens of books. I joined online communities and listened to podcasts and conference recordings. I attended speaking engagements and even got to see the incredible Temple Grandin speak. I talked to teachers and counselors and other mamas who had gone this way before me. It was all I did for awhile. There was something deep in my gut that told me NOT to medicate my daughter just yet. To take the time and do the work first before going that route. To dramatically change her- and the entire family’s- diet, sleep habits, routines. To try every alternative therapy I could find and struggle through the daily challenges the way you do when there’s a terribly steep learning curve. As it turns out, my decision was not a popular one. Sometimes, other mamas took my unconventional decisions to mean that I judged and disapproved of theirs. Doctors kept reminding me that the recommended protocol was simply medication and therapy. Nothing else. And they’d nod knowingly at me and repeat how much easier the medication would also make MY life. They weren’t wrong. But still I pushed forward on a path that was ill-defined in many ways. I followed it mostly based on mama bear instinct. I worried often. About the decisions I made and about Libby’s future and about what other people might think about it all. After awhile I got over a lot of those worries but it took time. Looking back, one of the things I’m most grateful for is how each and every teacher Libby has ever had in her life- and she has truly had AMAZING teachers every single year- supported these choices and never once made me feel like we were headed the wrong way.
But ohhhhh the tantrums and struggles we had. Libby was NOT ONCE on time for school, or anything else, in 8 years. Not.Even.Exaggerating. And we tried every single thing there was to try to fix that. Nothing changed until one day, quite recently, she just started being ready on time. And that was that.
Libby also struggled with transitions. Deeply. Did I mention that we were a military family until Libby started the 4th grade? So many transitions so often that I can’t even count them all. And yet, today, she is amazingly resilient and flexible. She likes to travel. She likes to meet new people. And she’s much better with new situations and likes to figure out how to navigate them all on her own, mostly.
She hated loud noises. A fun party would often end with me whisking her out the door as a meltdown was beginning. Even when she was an infant, it was hard not to notice how much Libby hated the vacuum cleaner or the sudden, unexpected noise of a door slamming. She didn’t love to be touched and preferred to be left alone to fall asleep in her crib- unlike her brothers who preferred to be held all day- and all night- long.
The meltdowns were the worst. They happened daily and usually several times each day. They could be public and awful. I learned to simply give her space, quiet, a good snack, and my consistent presence- but not too directly– so she could use these meltdowns to release the tension that had built up as she struggled to hold it together all day long at school. Her teachers and classmates never saw these meltdowns. They happened only when she was in the safety of her own home: she was like a little volcano that had to let off a little steam to keep things going.
None of this was easy on anyone and I think it must have been hardest on her brothers. Libby could be embarrassing. She was disruptive without meaning to be. And the things that had to change for her benefit often meant that they had to change for the whole family. We stopped eating gluten and dairy and soy. We started eating strange new things like fermented foods and soaked and sprouted raw almonds and avocado smoothies and fish oil off the spoon and lots and lots of supplements. I became rigid about early bedtimes because it helped. We did lots of new things like the infrared sauna and Neurofeedback and essential oils and homeopathics and hot Epsom salt baths and many different kinds of therapies, both at home and elsewhere. We had lots of appointments. Those poor boys were sweet with Libby when she was little but after awhile some resentments grew. And it was hard to watch that happen. Libby loves her brothers dearly and wants them to love her too, but often doesn’t see the ways she sometimes makes things harder for them. Now, they all bicker, as siblings often do, but I also see her brothers watch out for her as only brothers can. I know that when it counts, they’ll be there for her.
And through all these challenges Libby was, and is, some other things- the happiest and biggest smile in the room (always), the sloppiest and best kisser and hug-giver, and the most persistent person ever when she wants to be. I have a sweet picture I took of Libby long ago. It’s the first one to come to mind when I think of Libby and her journey. She’s about 5 or so and she’s buckled into the huge seatbelt on a school bus. She’s got the most adorable innocent little pigtails and a huge excited grin on her face. What you don’t see in the frame is just as important- this was Libby’s first school bus ride, but it was the short bus. And also the first time I didn’t take her somewhere myself. It was the day I accepted help and let her go find her own way. So yes, after I snapped that photo years ago and waved to my baby as she happily bounced off to her special education teachers, I cried. There was a fair amount of crying in those years.
Today, Libby is dearly loved wherever she goes. I’m serious. Sometimes younger kids from her school will stop me in the grocery store and ask in awe, “Aren’t you LIBBY’S Mom?!” Even though close friendships are still a struggle for her, she’s a celebrity of sorts in these parts. She does lots of things because she likes them, not necessarily because she’s good at them: she sings in the talent show and she plays basketball and runs track and plays drums in the band. She finds time to play with the little toddler boys next door when she can. She asks me what she can do to help get dinner on the table. She gets her chores done well, and fast. And she gets GREAT grades in school- with none of the pull-out services I was told she’d require. She’s organized and cares about her work and is always looking out for others. She cries along with me at sad movies. She talks about going off to college (she says she wants to live in Hawaii or Washington, and you’d better believe it!). She’s going to be a veterinarian someday and wants to volunteer at the local animal shelter in the meantime. She’s excited for all the things to come- especially moving to high school in the Fall. She’s honestly the bravest person I know. And the kindest. Yes, Libby still has Autism. But things have improved dramatically. It takes new people awhile to notice her little quirks. She’s still just a bit different and she still needs a little help sometimes. But some of the things she excels at are things that other people don’t learn in an entire lifetime.
I know she’s going to be okay. Far more than okay.
None of this happened easily. When people talk about shedding blood, sweat and tears, I know exactly what they mean. But, strangely, it also seems like it happened easily too. Libby’s path was truly meant to be and it’s changed us all- I believe, for the better. Maybe I did do it the hard way. Maybe medication would have done something different, or even better, for her and us. Who knows. But I’m now truly grateful for the journey and it’s hard to imagine going back and changing a single step.
And so, as Libby and I danced and hugged and ugly cried after her graduation ceremony, I recalled all of these things in a flash. In one moment, I felt the fear and disappointment and shame of hearing that my daughter would never be normal and do normal things (whatever that means, anyway). And the grief that I’d never have the close bond with her that other moms and daughters have. But I also felt the gratitude and awe of seeing all the things she’s become despite, and because of, her immense challenges. Yes, there are some things she will likely never be (me too). But, already, she is strong and joyful and kind and giving- all the things we wish for our children.
To see the beautiful-inside-and-out girl she’s become is both a miracle I never dared to picture and exactly what I expected from this sweet girl.
And so, all you mamas struggling against whatever expectation of motherhood or family life is largely going unmet right now: I urge you to sharpen those mama bear claws, hunker down for the winter with those babies held tight, and simply wait for Spring to come. Because it will, at some point. It always does. And it will look differently than you thought it would. It always does. That, perhaps, is the very thing that makes it so blindingly beautiful. And when Spring comes: dance. Even if you have to ugly cry at the same time.