Tony feeds off of the emotions of those around him, especially people he deeply loves. So if a member of the family of his heart is having a bad day or rough moment, he can rapidly careen out of his own emotional equilibrium. Sometimes these situations can cause deviations to the schedule he’s used to. This isn’t a big deal for most people, but for Tony, either the schedule change or the loved one in distress alone can mean the difference between a great day and a day that you end up feeling needs to be celebrated with an “I survived…” t-shirt. His brain just can’t transition smoothly from one emotional state to another. If both an emotional event and a schedule disruption occur together, it may take him days with a goodly amount of assistance and support to pull himself back to a more functional place of emotional regulation and overall functioning.

We experienced this the week Emily was writing her guest post, on both Tuesday and Wednesday, and by Thursday our little man still hadn’t recovered his emotional footing. On Tuesday we got the double whammy of both potent emotions and an accompanying routine change barely after the sun was up. I tried to distract him with something I thought he would enjoy to occupy his attention until we were able to leave on our walk, but Tony has his own concept of time that knew the schedule was off and would not be appeased.

What ended up happening was I chased him around our porch as he jumped, shrieked, and tried to forcefully crack his head into the stucco walls. Like every other situation in his world, saying “stop” does not typically get a response, nor can he be talked down from this state. As soon as I was able to get his head safe I picked him up after he made repeated attempts at fleeing and pushing me out of the way while producing ear splitting wails, which isn’t exactly easy because he’s strong enough at this point to knock a grown up down. I brought him inside as he kicked and shrieked, where he could use his spinning top or chair to help calm himself. Once he was calm and we were able to head out, he tried to flee up every flight of stairs we passed and to hug and lick every light pole, sign, and metal box on the way.

When Tony is having a harder time, I tend to pull back on some of the more structured therapy tasks that I am responsible for and focus on helping him to regulate. Often his impulse control issues become so much worse I spend a great deal of time keeping him from eating books or doing dangerous things during these time periods. But, we often still have to attend therapy sessions with other providers, and for Tony, if he’s been thrown off by something else in his day, he’s currently incapable of setting it aside to focus well on the tasks at hand.

For that Tuesday, we had both occupational therapy and speech therapy. These therapies are in his lowest functioning domains, so he often struggles to work his way through those sessions even on the very best of his days. Rosette, his current OT, was up first. I have to say, I love the activities she prepares and brings in with her. Sometimes I copy the more novel activities she’s set up and make one of my own, because Tony struggles with these skills enough that I usually need to provide him lots of extra practice at home before he will be comfortable enough to participate with her.

That was certainly the case with this egg cracker activity. Pictured is my imitation…I only made one adaptation: Rosette put cute little Easter themed erasers in hers as the item to be emptied out, I put in a couple of skittles in each of mine because I knew that would give Tony a little extra motivation to try and open them. She used the smallest plastic eggs I’ve seen on the market for them because that makes them challenging enough to build finger strength. Tony tried to imitate her, and when his fingers weren’t able to do the job, paused, and then popped one in his mouth. His willingness to attend steadily disintegrated throughout the session, but Rosette was super patient with him, which I appreciated.

Speech Therapy, which we do in clinic with Miss B started out in a calmer place. I had brought in his top level motivator, a movie, for which he was sitting quietly in the lobby. He even said “hi” on his speech device to Miss B and her observer, Miss N. We didn’t know Miss N was going to be there, and while I was very happy to meet her, Tony has a harder time with people he doesn’t know, especially if he’s not expecting them. The session quickly turned into Miss B and I alternately trying to keep him from banging his head into the wall, chewing on her stack of reward papers, stopping his attempts to flee, and dealing with refusals to go to designated areas or leave the swing on his break times, with me managing some of that by dead lifting him and/or “frogging him.”

Basically that’s me doing a modified jump squat with Tony held out in front of me helping him “frog it” across the floor. OK, he’s not really jumping with me, he’s more like a dead weight when we’re doing this, but he does let his body be moved forward- it makes him laugh and gets him slightly more cooperative, breaking the distressed streaks up, while physically moving him where he was refusing to go. Tony’s about 62 pounds…this can turn any moment into an extra workout. We ended by leaving out the back exit so we wouldn’t disrupt other clients in the lobby.

Pretty much most of the next couple of days looked like variations on these themes. Tony showed up to physical therapy the next morning and burst into tears and started banging his head when asked to do something with which he normally cooperates. Miss E did a great job being patient with him and providing sensory input to help him regulate. Public safety outings were mostly out doors and looked more like high speed chase wrestling matches with a ton of deadlifting because he kept trying to run into the street or up onto people’s porches to grab things or dropping to the ground (naturally near lines of ants), and then once he was there rolling to the side and trying to eat rocks. Wednesday’s community safety outing took us an hour to get around the block, and both my shoulder and my leg muscles were thankful when we made it home. And sometimes, he gets so upset about being asked to go a different direction that if there’s not a chewy in his mouth, he’ll try to sink his teeth into me, but he does at least pull back when I tell him not to bite me because he is only trying to calm himself, not inflict hurt to get his way.

Sprinkled in with what was two days of me spending huge chunks of time keeping him safe or helping him regulate were a couple of amazing moments where he calmed down enough to try something new, or where he was able to successfully open one of the eggs I made for him to practice with on his own. Most people don’t see those quiet moments when they look at my son for the successes that they are, because they see that as what a child his age is expected to do. If we’re in public, they just walk on by, thinking at the most how odd it is that I’m heaping him with so much praise for laying on a display hammock he’s never seen before (Tony has a history of struggling to even touch new things, much less try them at first sight).

I’m not going to sugar coat this for you…sometimes people don’t realize exactly how deep Tony’s challenges run until they experience it first hand for themselves. Yes, for all of the progress he has made, Tony still has huge struggles, some can be very hard, and I work my backside off helping him. But three days with mostly difficult, stormy moments ended with the kind of break through calm that tells another side of his story: our son is capable of moving forward.

He started successfully putting together two piece picture jigsaw puzzles with words later in the week (an emerging ability). Friday afternoon he sat on our front porch steps without trying to flee for over half an hour, simply playing quietly with rocks, successfully inhibiting his desire to eat them. Just three months ago, Tony wasn’t capable of doing those things any day of the week.

Why Does Tony Put Everything in His Mouth?

Well, that’s complicated, as I imagine it is for every child with developmental delays or sensory issues. Sometimes he’s chewing to calm himself down, because joint compression in the jaws will release chemicals that do this…which is probably also why some people are stress eaters 😉 Sometimes it is because he’s tried to do something, like with opening the eggs, and because he couldn’t do it, he’s trying to do something with the item that allows him to feel successful interacting with his environment- and popping something in his mouth is a skill he feels confident in. And sometimes, it’s probably a bit of both because hard or new activities stress him out.

And sometimes, he’s just seeking new sensory input to help his brain figure out how to organize the world around him. We try to provide numerous items that are appropriate for Tony to chew on, but unless it can be correctly identified why Tony is chewing on something, he can not be successfully redirected. If he’s sensory seeking, he needs to be given an acceptable item to eat that has as close to the nonfood item texture as possible. When items are too difficult for him, he needs immediate and frequent support for as long as it takes to master the skill. If it’s calming, I give him chewelry or a vibrating toothbrush to chomp on (the vibration intensifies the effect).