- Every milestone is worth celebrating. It doesn’t matter how small.
- Perfect is not real.
- Sometimes, my self-care is THE most important thing.
- Take the long view. Big picture is everything.
- This, too, shall pass. It always does.
- Humor goes a long way.
- Be responsible for the energy I bring into a room.
- Be gentle.
- Notice what my face is doing.
- I get to be human. I get to be human. I get to be human.
- Forgive myself.
- Forgive my kid.
- Other kids and families might do things differently not better, not “normal” just different.
- Advocate for my kid with persistence, patience, and love.
- Saying no is really important.
- Saying yes is really important.
- Get on the floor and play.
- I’m not in control of, well…barely anything.
- People act out when they are afraid.
- I act out when I am afraid.
- People stare. Smile back.
- I am a superhero.
- My kid is working as hard as I am.
- Hold onto joy every time it shows up.
- Get help.
We are sitting at the dining room table for yet another teary session of math homework. She has used up all her focusing tools- chewing gum, lighting a peppermint candle, choosing which problem to start with…nothing is helping. Then I see the light in her eyes change. They grow dark and serious in that intense way I know so well. She is fighting for truth.
“Mom, why can the kids around me do math but I can’t? I learn it but I can’t remember it. The other kids remember. Why, mom? It doesn’t make any sense.” There is shame in these words. And desperation.
I’m not planning to have this conversation today. I didn’t wake up knowing that I would be called on to deliver this news in a way she can digest it. My wife and I are still digesting it ourselves.
We go through periods of intense grief and even anger about her special needs. Spending time with other people’s kids can trigger it. After a morning babysitting my dear friend’s toddler, I spend the afternoon sobbing. This three-year-old has social skills that are more advanced than my eight-year-old. We travel to Texas to visit cousins and breathe through frustration as my daughter’s anxiety and hypervigilance exhaust everyone in the house. We go to IEP meeting after meeting and are overwhelmed by how many professionals are engaged each week in supporting my kiddo’s learning. After weeks of her violent PTSD fits, we refocus on caring for ourselves so that my daughter’s needs don’t take over our entire lives.
But here she is, asking for the truth. So, I share with her what gets me through my moments of fear and grief and doubt and anger. I share with her the truth about her resilience.
“I’m telling you the truth. Are you listening? Do you remember how you were born very tiny and that you came out early? One thing that happens when babies are born early is that their brains don’t get enough time to develop. This is not the baby’s fault! This is nobody’s fault. It happens to many babies who are born early. It means your brain has worked extra hard to develop and grow ever since you were born. And guess what? Your brain is doing very well. Very very well. That’s because you have a powerful quality in you. You are FIERCE. That means you are somebody who doesn’t give up. Even as a teeny little baby, you were so fierce that you fought to live. You fought to grow. And now, you are fighting to learn math. It is harder for you. You are right about that. But working hard and not giving up are wonderful qualities to have. You also have mama’s who love you and teachers to help when things feel hard. You are not alone.”
I hadn’t researched what to say. I hadn’t prepared for this question. I just opened my heart up and felt around for what she needed to hear. Of course what really happened is that I said the words I needed to hear.
I think healing the dissonance between our fantasy of parenting and the truth of it will be a long road for my wife and I. But moments to ignite our empathy and focus on our daughter’s amazing gifts help. They help a lot.
A month ago, my best friend called me and we sobbed. We both felt despair that the man running for President of our country admitted to groping women without their consent.
Today, he moved into the White House and 600 groups of women all over the world are marching in protest. My friend and I were determined to take action in some way. But marching with our young daughters (mine with special needs), felt like more than we could take on. My daughter is highly sensitive to crowds, to yelling, to cold, to other people’s emotions. Participating in the Women’s March would likely trigger a trauma response and days of violent fits. But this is a moment in history we don’t want to miss. I want to look back on this time and know for sure that I was intentional and conscious. I want to model a balance between self-care and activism for my little girl.
My friend and I knew that if we got our families together, we could come up with something meaningful to do even if we had to stay home. So, my BFF packed up her little girl and is making her trek to my house in Oakland right this minute. I think we came up with a pretty great plan for our Go Girls!
Read more about it on the Spotlight: Girls blog….
Finding Dory was aDORable, am I right? Who doesn’t love Ellen and remember Finding Nemo like it was yesterday? Nothing better than packing up your family, getting your popcorn buttered and settling in for a sweet afternoon at the movies. Unless you are an adoptive parent. If you adopted your child, you do your research before going to any movie. You know that for some reason, every other kids movie out there includes protagonists who are orphans, in foster care, have dead parents, mean parents, tragic separation from siblings they love or in the case of Finding Dory, spend the entire movie in a desperate search for their birth parents. Sigh.
I get it. The worst nightmare in the psyche of any child is to be deeply alone in the world and abandoned by their parents. I’m not a therapist, but I imagine that for kids who are securely attached, seeing their worst fears play out on the big screen feels good because it externalizes the nightmares and ties them up with a happy ending. Then, the typical kids get to hug the parents who birthed them and feel safe, secure and aware of how loved they are.
But what if the nightmare of losing your family, being abandoned or mistreated actually happened to you? Seeing it played out would not feel good. It would be scary, retraumatizing or humiliating. They would be anxious on the way to any movie and have trouble sleeping after, even though they begged to go see it.
As a parent, I have to weigh the pros and cons before seeing any flick. I heard that Finding Dory could kick up lots of grief but that it wasn’t too scary. I also knew that all my daughter’s friends at camp were seeing it and talking about it. Having things to connect with peers about is a definite pro when it comes to my quirky girl. Plus, her big cousin was in town from Texas and wanted to go. We didn’t want to deny them the sweet memory of seeing this movie together. So…we went.
We ate a big dinner before and didn’t get candy. Instead, we brought tiny treasures wrapped in tissue paper. When our daughter got anxious during the movie, she turned her eyes to her lap where she could unwrap a little something to focus on instead. While Dori was having flashbacks about the major loss in her childhood, my daughter opened and found a tiny shell. While Dori was longing for her Mommy & Daddy, my little girl found a tiny square of clay to squish into shapes. When she got bored with a treasure, she’d put it in Mama Lynn’s purse and watch the movie awhile. Then, she opened another. Bringing sensory tools to the movies was not something we’d tried before. After Inside Out, we spent 20 extra minutes in the theater holding her while she sobbed. The Good Dinosaur sent her into so many tears, I had to bring her home and rock her like a baby until she calmed down.
But I’m glad we tried Finding Dory before giving up on going to movies all together. With tools to manage her triggers, our daughter got to see a girl lead character take center stage in her own life. Dory and lots of the animals in this film have a vulnerability that makes them different. Dory’s “short term memory loss” and distractibility were a wonderful mirror of my daughter’s special needs. Dory is loveable and adored. Just like my little girl. Dory is a leader. She has courage. She overcomes her biggest challenges. I want my daughter to get to see examples like these of girls in media.
After the movie, my daughter’s review was “ I liked it Mommy. But some parts were sad.” OMG she used a feeling word! Success.
Go see Dory. Pack treasures and tissues. Let me know how it goes.