Be Gentle

A few weeks ago I received a paper in Mark’s preschool folder with two of the most anxiety provoking words for a special needs parent, field trip. Mark’s class would be visiting the theater on campus where I work for a kinder concert. I couldn’t imagine sending him anywhere outside of his routine without one of us going along so I requested to meet them at the theater; after all he was literally in the building next to my office. So when I found myself waiting for the bus inside the lobby a pit of worry set in and I quickly questioned my chaperoning choice. Mark is getting larger and more difficult to handle, and I’m a very petite person. Then a deep feeling of sadness took over as I began to think about how my presence doesn’t seem to really fix anything. Unlike when the baby falls and quickly recovers at the sight of my face, for Mark, seeing me may be a novelty for a moment but it doesn’t appear to change much.

Mark did better than I anticipated, adjusting to the new setting as we followed along to our seats in the theater, but then when the expectation was to remain there and be quiet, it was clear that I had a fight on my hands. Just as soon as I began counting the minutes until we could leave I realized that I needed to change his diaper. Fully aware that there were no places to change him in the building that wouldn’t freak him out I took his hand and lead him to my SUV in the staff parking lot. It was cold, raining and I had very little space in the back hatch area thanks to the boxes of clothing that needed to be dropped off at Good Will.

He cried, we wrestled and I prayed that none of my co workers would pull in next to me to see me struggle.

Once I finished the diaper change we headed back into the building and I prayed that he wouldn’t grow upset once he realized we weren’t leaving. I just kept telling him that once we got inside we could listen to music. We made it back into our respective row and our previous physical altercation resumed as I fought to keep him from escaping. At first he was subtle, pretending to cuddle in my lap in an attempt to spin into the aisle, and then he resorted to trying to body slam me. My jaw and nose absorbed some of the force and then I looked up and realized that an entire row of kindergartners and their teachers were staring at us. Mark’s vocal stims, loud noises and attempts to overtake his mother not surprisingly distracted them from the musical selection on stage. I also started to worry about not being able to handle him in the presence of his teacher and assistants. They handle him everyday and here is his mom unable to do so. Feeling the familiar sense of anxiety and dread, I decided to practice my newly discovered self talk. I began to silently say “I know this is really hard, don’t worry about people staring, just continue to love on him. You’ll both be OK, and this will pass soon.” I felt myself relax and my silent internal monologue was right. With the help of showing Mark photos of his little brother and telling him to listen to the music, I kept him in our row and it was over relatively quickly.

A few days before the field trip I listened to a Ted Talk by Kristin Neff who explained that she was a self compassion evangelist, spreading the good news of treating ourselves kindly. Being nice to yourself probably seems like a given but for me it was foreign. And I didn’t realize just how foreign until the end of her Ted Talk when she told the story of her own autistic child throwing a wicked tantrum on a transatlantic flight. Knowing that there wasn’t much she could do to stop it mid air, she paused, focused, placed a hand over her heart and in a sweet, compassionate voice said to herself “This is so hard right now… I’m so sorry you have to deal with this, but I’m here for you.” Upon hearing such inward focused gentleness the tears that I’ve held back for months burned my eyes. And it was in that moment and during the subsequent therapy session when I realized just how awful I had been to myself.

My therapist had asked me to go deeper, and to think about what was beneath the fears that I had unpacked. It took me some time but I realized that though I feared that my children would die, even more so I feared that it would be my fault. I would be responsible. I truly believed that every challenge we faced was my fault.

And it was this assignment of blame that plagued me and lead to the constant berating that has become the norm in my head. Common inner sayings would be,

“Why are you so tired? Now that you put the kids to bed go back downstairs and clean the kids playroom. You know that Mark thrives in a clean space. What if he or the baby chokes on a Barbie shoe?”

“Mark needs more variety in his diet. His restricted eating will only worsen if you don’t figure out how to work in new foods.”

“Mark isn’t talking because you don’t work with him enough.”

A lazy, incompetent failure is the message I had been sending myself on a daily basis for quite some time and deep down I had also adopted the idea that I was ultimately to blame for Mark’s diagnosis.

Clearly I have some work to do. Blame doesn’t need to be assigned to everything and I need to work through why I assume responsibility for it all.

So when I was introduced to the idea of speaking so sweetly to myself I ran toward it with open arms because I had been so parched for kindness that I forgot what it was like to be treated this way. So in that theater, wrestling my sweet boy, I decided to make a small choice to be loving and gentle to myself. And in doing so, I made it through a challenging moment and was able to see that I didn’t fail Mark, and in fact I may have actually been comforting to him.

Later that evening I said to him “Mark, it was so special for Mommy to go with you today.” And surprisingly he responded and said “special”.

He’s pretty special, and I’m trying to work toward embracing that his mom might be too.

The Weeds

When I was 14 I joined the color guard in our high school marching band. Not the twirling flags or rifles color guard, no no, the people that hold the banner and the American and state flags. I point this out because I was pretty confident about my incapability of doing anything more than that. After a few months of time spent with upper class men in the color guard who felt the need to put me in my place as a freshmen [read bullying], I had enough. I went to the band director and asked if I could be placed on an instrument. He needed French horns so I was switched into concert band and was handed this complicated beast of an instrument. I signed up for private lessons. I practiced and practiced, and by the time I was a junior I was first chair and selected for All County (big deal for band folks). I gained control over a completely powerless situation, and thus a coping mechanism was born.

The same would happen again and again as I got older. I would take seemingly challenging scenarios and fight my way out of and over them. Hard work, perseverance and determination paid off, every time. That equation served me well in my education and career. And then when Mark was diagnosed with autism and SCN2A I dug my heels in, and set into motion pummeling away at it like usual.

Eight months into Mark’s diagnosis, I was helping to plan a color run to raise money for research. I did a restaurant fundraiser, a quarter auction, a paint night, and then another color run the following year, and again this year. I threw myself into fundraising, advocating and learning everything I possibly could about autism and SCN2A.  I read books, studies, listened to podcasts and immersed myself in the special needs world. I started this blog. I wrote and shared, and poured myself into understanding insurance, therapies and biomedical treatment. Just like all the times before, I was going to educate, work and dig my way out of this rather troubling and unsettling situation. But this time it didn’t work.

Mark is not cured. He still has autism. And I’m in rough shape. My resting state has become that of dread and anxiety. I replay some of Mark’s scarier moments in my head repeatedly. I jump when my phone buzzes with a text or voicemail and I worry endlessly over the possibility of seizures. I fully realize that adding another baby to our family and the subsequent sleep deprivation has magnified these feelings but they are valid none the less, and my current reality.

I struggle to really engage at work. When I hear my colleagues chatting about their plans for a holiday or weekend, I can’t relate. I’m held prisoner in our home because being out in the the world is so much harder with a child like Mark. An unexpected errand or a stop at a foreign gas station will result in a head banging tantrum requiring me to hold onto Mark’s face and yell above the screaming “first gas, then home!”

I don’t watch any popular TV shows, go to the movies or have a clue about pop culture. I spend any spare minutes I have intensely focused on whatever obstacle is in front of us. This year after Mark entered pre-k I saw the issues within special education and I got to work advocating for improvement. (See the theme? Push, push, push.)

I’m a bad friend. I’ve forgotten birthdays, important things and anniversaries. I even forget to ask how other people are doing because I’m so inwardly focused. And I’ve fallen off the grid for weeks or months at a time, surfacing only to post on social media in an attempt to avoid complete isolation.

I have PTSD. And I don’t say this lightly. It’s true. We’ve been through a number of traumas and I’m stuck in the cycle of grief. I’m not in denial of our situation but I haven’t fully embraced its magnitude. I haven’t accepted that Mark will always be different; that our family will always look different. Our normal will not be the normal of my friends families. When people say things like “they’re only little for so long” or “enjoy these years, they’ll grow up before you know it”, anger bubbles up inside of me because Mark will be our eternal little boy and most likely won’t leave us.  I fully believe that research is speeding to a cure, but will it be too late for Mark? Will he be too old for it to reverse his neurological trajectory? It pains me to type those words and I don’t want to believe them. I have always equated acceptance with defeat and loss of hope and I haven’t been able to go there. Acceptance meant that I lost the game I was trying so hard to win.

I found myself sitting on a couch across from a therapist a few weeks ago after I reached a point where I determined that I needed reinforcements. She explained that hope and acceptance were in two different buckets. I explained how I felt that they were in direct opposition to one another. And then I told her how I felt about God. After I finished sharing how I felt like God was trying to repeatedly teach me something that I wasn’t getting, that prayer felt useless because He had ordained all of these troubling things and how I felt devoid of blessings, she looked at me and said that if she felt the way I did about God, she would be an atheist. In that moment I realized how incredibly lost I was.

I’ve mentioned before that I’m not a crier. I realize now that it’s because I’ve numbed myself. And what I didn’t realize was that I not only numbed the fear and sadness I have about Mark’s diagnosis but I also numbed peace, joy and happiness and haven’t had access to those feelings for quite some time.

I see the constant vacant look on Mark’s face and if I let myself really focus on that, and wish for him to come back to me, a knot forms in my throat and as quickly as I let myself slip into that place of sadness, I shut it down.

Sometimes I pretend for a brief second that Mark is cured. I imagine him engaged, talking, excitedly pointing to something, with an intense desire to share it with us. I envision Jillian interacting with him in a normal way. Luke and Mark playing together, and most notably I can actually feel myself relax. My shoulders come down from my ears and a feeling of hope and anticipation of our future as a family floods my senses. And as I feel the warmth of peace wash over me, I abruptly end the fantasy, bottle it up and shove the sensations away, to be replaced by fear, trepidation and hopelessness. I realize now that I’ve been placing my hope and ability to be happy upon Mark being cured. For many of us, we delay happiness until we get things like a new job, or house, or go on vacation, but I’ve delayed it upon something a lot further out of reach and potentially years into the future, if it all.

And then the feelings of guilt creep in. I feel guilty for feeling sad about Mark. He’s still alive. I’ve received the gift of hearing his little voice say a few choice words. He’s able to walk, not in pain (that I know of) and doesn’t require much complex medical support, so this should mean that I’m thankful, right? But he’s incredibly mobile, has no regard for his personal safety and has just enough awareness to be dangerous. He has angry outbursts when he can’t communicate effectively which results in gut wrenching tantrums and screaming. And most recently we’ve become acquainted with Pica as he’s been eating non-edibles he finds around our house. So then the guilt is replaced by fear of how much harder our life will be as a he grows and becomes too large to manhandle. And thus the endless cycle of guilt, fear and anger ripples through me.

Obviously I can’t outsmart this situation. I can’t crush it with determination and grit. What I have to do is much harder. I have to be still and know that God will fight for me; not necessarily for the cure that I want and crave, but fight for me to make it out of the weeds; for me to see the light in the distance, and embrace what I’ve been given. He has abundantly blessed us, and I often can’t see it because for every video I share of Mark saying a word, there are hours of lining objects and shrieking while he paces back and forth across the dinning room pushing a Doc McStuffins cart, looking past us focused on something unknown in the distance. And then there’s the several failed attempts at potty training and for the past eight weeks he has oscillated between vomiting and diarrhea, leaving us completely baffled. I have gotten stuck in the mire and I can’t seem to pull myself out.

There’s a song that became my anthem when we started our journey. I would sit at my desk while I watched Mark fixate on the knots in our hardwood floors while he spun in circles. Coldplay’s “Fix You” would boom through the house…

When you try your best but you don’t succeed
When you get what you want but not what you need
When you feel so tired but you can’t sleep
Stuck in reverse

When the tears come streaming down your face
‘Cause you lose something you can’t replace
When you love someone but it goes to waste
What could it be worse?

Lights will guide you home
And ignite your bones
And I will try to fix you

Fix him. That’s what I have wanted to do from the start. Restore him to the little boy that I want so desperately to have. One that doesn’t have to work so hard for every single thing. A little boy who can focus, engage and allow us to know his wants and desires. And a boy who doesn’t have a ticking time bomb of a genetic disorder.

And instead it turns out that it’s not him who needs fixed.

God gave us the gift of Mark. I will miss so much if I continue this numbing routine. My kids need me to be present, they need me to not be such a jumpy paranoid mess and they need to get to know the person who stands up to challenging situations and makes the most of them. I know that I’m capable of that, I was at 14 and I am now. I just need to get my head back in the game, focus on Christ and for the first time truly embrace that there’s more in this life that I can’t control. Little by little, I know I’ll find my way but this time it probably won’t be because of my own doing, and I think I’m good with that.