I could hear the sound of children talking excitedly and calling to one another before we even crossed the doors. Inside, the noise was everything you would expect from an elementary school assembly devoted to building school spirit and honoring the achievements of certain students. A few teachers were leading some of the kids in chants I couldn’t even begin to focus on, because just seconds through the door and Tony was already starting to panic.

I knew a few things from the moment I had received an e-mail from Hannah’s teacher letting me know she was going to be recognized at May’s assembly last year. Hannah would be devastated if one of us wasn’t there. Andy’s job made it impossible for him to be there. It would be a miracle if I could get Tony through the assembly long enough to actually see her get the award. Nobody who knew what was going on with Tony and was capable of providing the level of care and support required at that time would be available to sit with him for me to go. There would be people there who would be upset by my attempts to bring Tony there once he started flipping out and, devoid of any direct knowledge of his or our family’s circumstances, would judge me for everything from how I was handling things to why he wasn’t left elsewhere.

Above all else, I knew because of how important it was to Hannah I had to set out on a mission pretty much doomed to fail, because she too is my child and I love them both. In my love, they are equal, but I am not always able to give to each of them equally and it has shredded me to the point I am not sure how much skin is left upon the surface of my heart. This was just another day, another moment of being ripped apart- put in a position that felt impossible and torn between the needs of the two.

For a long time we tried to get Tony to use sound canceling ear muffs. He hated the way they felt on his head and would become frantic and occasionally combative if you even tried. Because he chews on everything, assuming we could get him to tolerate ear plugs, they are quite the choke hazard for him if pulled out and are not safe to use. When there’s that much noise, he will not focus on a movie on a device, and he doesn’t tolerate earphones either. There is not a book, toy, food, or motivator that can reach him and be effective when he’s feeling that scared, that stressed out, that panicked.

Welcome to part of the world of a child with intense sound sensitivities. And, while we had finally moved past the stage where being around large groups of people provoked vomiting, his anxiety in those situations was certainly still leading to potty related accidents.

Within the first 30 seconds of moving inside the gymnasium, he was already starting to freak out. I had brought him in his stroller, because sometimes being cushioned in that helps him to tolerate environments or situations with which he would otherwise struggle. The stroller wasn’t helping him here, the noise was too overwhelming for him. I began administering gentle squeezes, gave him his favorite piece of chewelry, and tried talking to him in a soothing, even tone of voice.

I had seen my friend Melissa within the first minute of walking in, we used to be in the same ward (our church’s term for a congregation) but this ward is like a cell going through mitosis…it just seems to keep splitting as the area grows. She smiled and came over and asked me a little about how Tony was doing and if we had tried sound muffs or not. I assured her we had as I continued to try and give Tony squeezes through this brief exchange. She went back to her seat, and within a couple of minutes Tony began to thrash in his stroller and cry, so the most humane thing for him (and respectful for the people around us) was for me to pull him out.

I pushed the stroller outside as part of my heart shriveled like a dehydrated succulent and collapsed under the cumulative pain of an overwhelming number of events that caused disappointments for Hannah. The places we’d had to leave so fast it gave me whiplash as Hannah cried. Eventually she moved on to trying not to cry about it, and finally landed on resigned stoicism as it turned into years of trying to work through some of his challenges. I thought about all of the things we couldn’t do because there was no way we could get Tony through them. How that to get Hannah any of those experiences our family had to be split in two, with someone staying with Tony while the other parent took her.

We had to do that very thing earlier in the school year when Hannah, with her school’s choir, went to sing before the start of one of our local baseball team’s games. I usually get to take Hannah to the Nutcracker, so we sent Andy with her to the game. I sat home wiping tears off my face because I couldn’t be there to see this moment…pretty quickly I decided it would be more productive to try and work on getting Tony through some stores, so I headed out with him to take on hard things of a different kind.

As I pushed Tony around in his stroller outside of the assembly, I tried to circle him around until the awards were over, hoping it would be a little bit of a comfort for Hannah to at least know I was there somewhere. Tony dug his feet into the ground, began to cry, and grasped the stroller wheels to steer us away from the doors every time we tried to pass them.

Sometimes when things are feeling dark and sad, someone does a simple thing that shines a brief ray of kindness into our world and gives me enough of a recharge to keep fighting on. After I had been out there a few minutes, Melissa came out. Her daughter is in a different grade and had been presented with her award already. She offered to push Tony around (who was calmer, but still continuing to emit distressed and angry bellows) so that I could go in and see Hannah getting her award. This was more than a ray of kindness to me on that day, it felt like a sunburst with a rainbow and spring flowers popping out of the ground for part of my heart. The other part was still throbbing, because to see Tony traumatized to meet Hannah’s needs still left my heart being forced asunder by the two ends of an ever cranking rack.

I went in to the gym, watched my Hannah get her award, waved, cheered…and when they were done presenting to her I walked out, thanked Melissa, and took Tony home. We had to circle back to look for his chewy because he threw it somewhere along the way to the car because he was still pretty angry and freaked out about all of this, and he spent a rough hour melting down and trying to self harm when we got back home.

Less than a year from that assembly, I know we’d still have a hard time getting him through that type of event, but the progress he’s made in public tolerance in the past few months has been a life line to our family. As I mentioned before in a previous post, Neurological Music Therapy (NMT) in my mind has had an important role in helping Tony acquire the level of tolerance that led to the moment in the picture with this post, where I was able to spend over an hour with both Hannah and Tony at our favorite local zoo.

Our trip to Zoolights this winter was the first time in years we were all together and haven’t had to leave from something Hannah wanted to be at before she was ready to go. I’m not sure my feet could feel the ground for several hours I was so infused with joy and gratitude. And the best part of it was that Tony was happy too…he walked all through the park on his own two feet, even the part with the Trans-Siberian Orchestra synchronized light display.

I have been experiencing a blooming of hope that I will not forever and always be ripped apart between Hannah and Tony’s needs. This feeling of being torn between the two is one of the worst things a parent can feel, bringing sorrow that can seem unrelenting at times. Some days it will still be mine to bear for years to come, but to be able to do some things together now where not one of my kiddos is in distress feels pretty amazing.

Zoolights Prep Strategies:

Wanna steal our Zoolights game plan for someone you know and love? Be my guest 🙂 just remember every person with either a sensory processing disorder or Autism will have their own unique differences and challenges you will need to make adaptations for. Emily’s going to be talking to you next week about NMT more, so other than mention that we used a metronome to help Tony’s ability to regulate himself I am going to focus on the other things we did.

We began taking frequent zoo trips a few months prior to Zoolights.  Early trips were brief (think minutes) during the least crowded times and Tony stayed in the stroller.  We then progressed to longer trips in the stroller, next to a few minutes of walking, then longer trips with increasingly less stroller time and more people.  Early trips required heavy snack reinforcement for walking. I brought his favorite brand of suckers for bathroom rewards, using the family restroom when possible to avoid dryers.  I try to leave on all zoo trips before he hits the melt down point, but if we push things a little too long and he starts to flee and freak out, I take him someplace quieter, get him calmed down, and start us walking in a direction that feels less threatening to him. I then give him the opportunity to request leaving on the computer so that he attributes leaving to communication.

I played Tony videos from youtube other families had posted from our local zoo’s prior years of light displays plus the zoo’s current year commercial so he would be familiar with some of what things could look like. I played Trans-Siberian orchestra in increasing amounts and volumes too so he’d be used to the music to prepare for that display in the zoo. We brought the stroller to Zoolights in case he became scared and wanted it, plus my softest jacket because he loves to rub his hands on it as a means of calming.