Exploring Options and Finding Solutions

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Over the course of the past 6 months Eli’s behaviors and emotions have been all over the place. From running up to people to give them hugs to going up to strangers and kicking them in the leg. From offering to share his favorite snack to impulsively throwing his toys. From sitting for long periods reading books peacefully to climbing on your back and punching you over and over. I had a rough day Friday and was crying alone in my room. He heard me from the hallway and ran in to give me a long hug and kiss. But five minutes later he was screaming because he wanted to cook something when dinner had already been made. His emotions and behaviors turn so suddenly and you never know what you are going to get.

We have had some success trying various ways to help him manage his behavior. We have him take deep breaths (asking him to “blow out the candles”), validate his anger and help him use expressive words (like frustration or irritation), we use time “in” where we sit next to him while he needs to regroup then talk about it, we practice ways to express anger appropriately (like saying why he is angry, stomping in place), and we apologize when we raise our voice in frustration and ask him how should we deal with it better.

Sometimes he goes into a cry that can last more than an hour and cannot be soothed by anything. We don’t know what sparks it and can’t help him through it. He doesn’t want us to touch him, or talk to him, and can’t be satisfied by anything. He might scream for something and when we bring it he doesn’t want it. This has been happening more lately and I am wondering if he is picking up on our anxieties of the second surgery coming up, if it is a side effect of the medication, or the HH itself. It’s hard because we know the behaviors he is presenting is not the real Eli.

So we try to have him engage in activities with the best rate of success for a good mood as much as possible. He enjoys spending time outside, so we hike, bike, garden, and he “builds” all kind of objects around our patio- like firewood, shovels, toys, etc that collectively make robots, or dog houses, or construction sites….

He enjoys dancing so we turn on some music and dance together. He loves to get in my arms and spin around or rock back and forth.

Eli is a one-man band! He loves to pound a drum while playing his keyboard and blowing on a recorder! He needs everyone in the room to get in on the action too! I think he likes the repetition of the drumming.

We had a sensory box a friend suggested. We made a box filled with rice, uncooked pasta, all sorts of dry beans and peas, pebbles, cotton balls, etc. As he would begin to escalate his behaviors I would get the box out and he was able play well in it for a half hour.

I’ve tried using Yoga with him. He has done it at pre-school and will do poses around the house now and then on his own but I haven’t gotten him to be able to do more than a pose or two from the kids Yoga videos we got out of the library. I am hoping to incorporate this more in the future.

He enjoys art especially painting and using clay. Clay or play-dough has a soothing effect as he manipulates it to make shapes or sculptures.

We try to remain optimistic that his behaviors will improve after the next surgery and as he gets weaned off the medication over the next six months (hopefully). And as he learns more ways to manage himself more positively. But we are also hoping for some professional help to be starting soon (we’ve been on a waiting list.)

Eli just started on the steroids he needs to prepare for surgery next week. He has “roid rage” pretty bad and nothing seems to work. Nothing. Hours of crying and screaming and it is so sad that he is just so off and there is nothing we can do for him. You feel helpless. And exhausted. And frustrated. My husband describes Eli on steroids as the Hulk with PMS. Not sure how we will get through these next few weeks.