Defining Word: Advocate

1. It’s 2017 and my son, Cannon, is almost three years old. He runs and jumps and smiles and climbs on everything—I’ve been finding his little body in precious [read: risky] situations on top of shelves or high up on various playground equipment since he started walking. He loves applesauce and yogurt and Dora the Explorer. He has a freckle on his lip, one single freckle, off to the right side, and when he smiles, he looks like a model. He’s like every other toddler in so many ways. But he’s different from many other toddlers in ways I’m still watching unfold, too.

   Cannon doesn’t speak. I’ve been praying for him for so long, that God would help him find his words. I have an iPhone note collecting every utterance, every intonation that could be a word. (I think we heard “ma, ma, ma” when he was pointing to a mountain in his Dora book last week?) We mimic and use sign language and cheer him on with all of our might, but still, the words haven’t come. His ability to tell me anything he is thinking or feeling or wanting remains elusive. One day, I confess in an essay that waiting for my son to speak is the most painful kind of wait, because there is no guarantee of how this wait ends. And a sweet friend says to me, “It’s kind of amazing to me, Katie, that God made you a writer. That as you wait and pray for Cannon to find words, He’s given you so many, and you find a way to use yours.”

2. My sister-friend, Emily, and I are walking on the beach in Florida talking about the enneagram and after some challenging questions and a long story short, I am pretty sure that I have mistyped myself for a decade. Emily, who has known me for 20 years, tells me: I really think you might be a 9, Katie. I don’t think you are a 2. So I do some reading and some considering and after thinking I’m actually every single number on the enneagram at some point, I conclude, yeah, I am most certainly a 9: the Peacemaker. I go to 6 in stress (anxious much?!) and to a 3 in health (I get stuff done!) And what is my core motivation: to create harmony in my environment, to avoid conflicts and tension, to preserve things as they are, to resist whatever would upset or disturb. Suffice it to say, fighting for something, being an inconvenience to anyone, making noise about something, none of it comes naturally to me.

   But then I had Cannon. And you know what, I can learn.

3. One evening a few weeks ago, Cannon started doing some very odd, almost seizure-like movements. It is not uncommon for kids on the autism spectrum to experience seizures, anywhere from mild to severe, so my radar has always been scanning the horizon for them. And while these movements look “jerky”, and like he is not in control of himself at all, I don’t think they are seizures. His breathing is fine. He’s conscious. But I take videos and call the doctor and within 36 hours, we are in the office with his pediatrician where Cannon continues to hold his arms in the air and jerk his head forward and backward, again and again. It’s awful to watch. The consensus is that Cannon has developed a very rare case of pediatric Tardive Dyskinesia, a difficult side effect of a medication he takes to help mitigate his self-injurous behavior. I cry all the way home, because I am the one who chose to try this medication 14 months ago. Has it helped? A little. But did it also hurt? I can’t answer without feeling like I failed him, and failed speaking correctly for him.

   

4. “I think it’s important to get a meeting with everyone to discuss the changes in Cannon’s class, as I’d like to understand them more,” I email the principal and the teachers. And then I add, “It is very important to me that Cannon’s paraeducators are there.” I’m told that’s not protocol, that paraeducators are not allowed at meetings about students and that we would have to get permission from the superintendent for them to attend. This actually baffles me. The paras hold him when he’s sobbing and don’t even flinch when he spits on them and have gotten bruised chins and scratched arms and still show up with a smile and it’s not protocol to let them attend meetings? Well, I say in response, I would like you to please get permission, because these two paraeducators are the most important people in the school to Cannon, and I cannot fathom having a meeting about his care that they do not have a voice in. They are his voice when I’m not there.And I didn’t say this, but I would have: I will die on this mountain: the paras come.

5. We make some changes to Cannon’s medication, but his physical movement symptoms do not improve a ton. And in fact, his self-injurous behavior seems worse. I trust our doctor explicitly—he’s been on our team since Cannon was born—but I don’t know, I wonder if we should explore other possibilities. So I send more videos, make another appointment. The pediatrician consults two pediatric psychiatrists. We tweak the medication some more. Finally, a new consensus: we don’t think this is Tardive Dyskinesia. Let’s see what we can do to mitigate his anxiety, and see if symptoms improve. So we re-engage the medication, and scale back on another one, and speak up to adjust things at school, and sure enough, the anxiety lessens, and the seizure-like symptoms have all but disappeared for now.

6. And the paraeducators got to come to the meeting.

7. Still, being an advocate is exhausting. And it’s a little bit lonely.

8. Fighting insurance companies for ABA therapy approval.
   Walking out of a therapist’s office the moment we knew she was not right for Cannon.
   Asking for meetings, inviting the stakeholders.
   Telling our pastor we really need a sensory room at church.
   Calling five pharmacies before tracking down the one with Cannon’s medication in stock.
   Fighting for more caregiver hours with the DDA.
   Being a squeaky-wheel, but one who writes thank-you cards.
   I really have learned.

9. A memory came up on my phone a few weeks ago: a picture of my two little toddlers at a park by our old house. I remember this day well, not so much for the cute little three-year-olds bundled in their cozies, but for what the picture doesn’t show—my oldest daughter, who was there that day as a nine-year-old, along with a few teenagers. There was also a girl with an obvious disability, walking around a bit aimlessly and making strange noises and attempting to connect with the other kids, and she had become the brunt of jokes among the group of teenagers.

   As long as I live, I’ll never forget Harper running up to me from the other side of the playground, absolutely indignant, saying, “Mom! Those kids are making fun of that girl! But do you know what I told them?”

   “What did you say?” I asked, genuinely excited for her answer.

   I remember she threw her hands to hip with gusto and re-enacted the moment like the most confident human being on the planet: “I said, ‘Hey, you should stop, because she has a disability and that is NOT her fault. She didn’t choose it. So you should be kind and help her, and not make fun of her!’”

   “Harper girl, I’m so proud of you for standing up for that girl,” I said, tears forming in my eyes as I listened to my brave daughter give an education to the teenagers who needed to be reminded of kindness that afternoon at the park. I don’t know yet if it comes more naturally to her than to me, or if she’s just been watching me stumble through and by the grace of God picking up the good moments more than the tearful ones, but somehow, this girl already knows, she has a voice, too

   

   .

10. My best friend tells me I should write a piece about being an advocate, and I’m so touched, because somehow, I think it means she believes I am one. So I sit down and start thinking of stories and I make a connection that almost has me laughing in holy disbelief, like Sarah when she gave birth to Isaac. Because I’ve been begging God for one thing lately—well, two things: peace for my son, and to know the presence of the Holy Spirit. My faith background is rich in intellectual theology and expositional scripture teaching, and I am so grateful for those things. But it’s not a background rich in Holy Spirit encounters. And I want them. I am desperate for them. And there on the page of my Bible, right in front of me, are Jesus’ words: “And I will ask the Father, and He will give you another Advocate, to be with you forever…he dwells with you and will be in you.” [1] And wow, nothing changes and everything changes, because all of sudden, it’s a lot less lonely being an advocate when you know you have one.

Notes:

[1] John 14:16

[2] For more “Defining Word” pieces, check out Sacred, or Single.

[3] If you’re looking for more writing on autism, you might enjoy my book, Gluing the Cracks, which is a collection of my pieces on disability all in one place.