What a day doesn’t even begin to cover it!
We’ve had tantrums, scenes that looked like something out of “Animal House”, enemas that took 5 people to administer, explosions of all sorts, a naked twelve year old covered in hummus, a scooter in the pool, and a five year old shutting lights off to show us his glow in the dark train tracks while we’re trying to clean feces off of sheets so we can put them in the washing machine. It has been the day that will never end. I apologize in advance for the length of this post, but I assure you it seemed much longer living through it!
Jim had a really rough weekend to say the least. His GI issues have been quite extreme for several days. He woke up happy and laughing so I was hopeful that today would be a good one. Boy was I mistaken.
He made it through his speech session, but by 10:00am the tantrums had started and continued for hours. For most of them four or five people were needed. It was all hands on deck this morning. Self-injury and aggression were at an all time high today, and you could tell Jim was in pain from his stomach.
When Jennifer, Jim’s occupational therapist, walked in we already had him restrained on the couch to prevent him from hurting himself. Once he calmed down Jennifer, Zack and Sierra (Jim’s ABA therapists ) took him for a walk, which is part of his daily routine.
I was in the kitchen with Lorrie ( Jim’s BCBA-D), when my phone rang… It was Sierra. I immediately panicked because I never get calls from the therapists when they go for a walk unless it’s something serious. Sierra explained that they were ok, but that Jim kept wanting to sit down during the walk and that they couldn’t get him to go any further and needed me to come get them. She gave me their coordinates and Lorrie and I jumped in my Jeep to find them.
By now you can probably see why I’ve considered putting a turnstile at my front door and asking people to insert a quarter when they come in- I could make a small fortune.
After a few minutes in the car we came upon a sight which looked like a frat party gone wrong … Jim was sitting on the curb with three therapists and an empty gallon bottle of Jose Cuervo Margarita Mix. He looked like hell! To an innocent observer I’m sure this would have looked like it warranted a phone call to the authorities. But of course I knew better! Lorrie and I got out of the car and asked what was going on – specifically about Jim’s new friend Jose.
So here’s what happend… Monday’s are recycling day in our development. The trucks hadn’t gone through the neighborhood yet, and Jim had decided to grab the bottle out of someone’s bin. He loves to tap on plastic bottles and after the morning he was having it was best not to aggravate him – good decision on the part of the therapists! Pick your battles!
Sierra explained that Jim kept trying to lay down on the ground and take his clothes off (an issue we face daily – we are no strangers to streaking). Luckily we arrived before any passers by got close enough to witness the exhibition.
We all helped assist in getting Jim safely in the Jeep. Lorrie drove and Sierra rode shot gun while I sat in the back with Jim and Jose (he would not put the bottle down). Zack and Jennifer walked back to the house since we couldn’t all fit. Jim immediately started hitting himself in the face, ripping my hair out, and trying to kick the windows. Luckily we didn’t have far to go. We all got him in the house and tried to calm him down. Nothing would soothe him for a while. He just kept wanting to self injure and he was screaming in pain.
By this time Jim had already been given Ex-lax the night before and Miralax in the morning. His issues are so bad that he takes an obscene amount of laxatives everyday just so that he doesn’t end up back in the hospital. The issue is that his brain does not communicate with his colon to push things along. It was clearly his stomach that had been hurting him for days, so we gave him Dulcolax on top of what he had already taken (don’t worry this protocol has been cleared by his medical team). We got him calm by using some sensory techniques and we were able to get him to complete some therapy with Jennifer for a little while.
The tantrums continued off and on for another hour and he still wasn’t going to the bathroom. If I had taken the amount of laxatives this child had in his body, it would have been necessary to duck tape me to the toilet so I wouldn’t hit the ceiling.
He kept gesturing to go in the pool so we all decided that was fine, we just needed him to remain calm. Sierra and Zack watched him swim for a few minutes while I tried to finally have a conversation with Lorrie about Jim’s programs, and then I heard screaming!
This time Lorrie, my husband and I ran out to see what was going on. Jim had run out of the pool naked (another common problem) and onto the outdoor day bed and there was blood everywhere. At first none of us knew where it was coming from. And then we saw that it was pouring out of his nose. He was freaking out and having a massive tantrum, which could have been caused by his stomach or the unfamiliar feeling of a bloody nose. Again all hands were needed to get him inside and safely on the couch. The tantrums kept coming for hours.
There was only one thing left to try! So the five of us took Jim upstairs to our bathroom since it was the only one we could all fit in. This was a five person job! You don’t take a kid as aggressive as he is upstairs to administer an enema by yourself, as you might be the one that gets it instead.
We slathered him up with half a tub of Aquaphor and got through the worst part. And then we sat tight..pun intended…
A small miracle happened, during our wait. After twelve years Jim finally wiped his himself! Hallelujah! He must have hated the way the greasiness felt, so he grabbed toilet paper and actually wiped! I was a proud momma who was sweating bullets from the whole ordeal. He stood and sat, stood and sat… and then he went running into my closet with white carpeting which is attached to our bathroom and I yelled, “Nooo! Not on the Louis!” Everyone started laughing hysterically while trying to get him out of the closet. Finally we had some success, although nothing to throw a party over.
The rest of the day was unfortunately more of the same, with one exception. Christian had been asking me for days to do a painting project with him. I had purchased some watercolors and canvases yesterday so that I could try to paint with both boys. While I was picking out the items in the store I thought for sure that Jim would not be interested and that it would be a lost cause.
But much to my surprise I must have chosen the right things to paint with. I had gotten some sponges which I thought might be easier for Jim to manipulate. He actually sat at the table with me and Christian and painted. It was the first time he had ever tolerated doing anything like this with me, and it was a very special moment. He kept smelling the sponges with the different paint all over them, which gave us all a much needed laugh. His face was covered in a rainbow, but I didn’t care. He was having fun and so was Christian!
While I was cleaning up our supplies, Jim was sitting on the couch with his new Kindle (#4 in the last 2 months) and Christian was getting a bottle of water out of the refrigerator… no big deal except we lock our refrigerator so Jim won’t get into it and eat everything or make a huge mess. I had forgotten about it, and the next thing I knew Jim had stripped off his clothes and was eating a container of hummus which he was wearing half of. What a mess!
After the hummus ordeal Jim wanted to go out back and swim again, which we were all for since it gives us a minute to breathe. We have a large patio around our pool and Christian likes to ride his scooter or bike around the pool while Jim swims, so we keep them out back. Jim started riding the scooter which was great until he picked it up and threw it into the deep end of the pool. At this point I was sure he was trying to sum up the day for me.
The fun continued for the rest of the evening, and then finally the grand finale! We were getting the kids ready for bed and had Jim already situated in his room. I was helping Christian into his pajamas when Jim came running into Christian’s room naked and jumped on his bed. Are you starting to see a theme here?
There was poop everywhere! We basically pulled a Hansel and Gretel and followed the trail back to Jim’s room. We got Jim and his room cleaned up so that we could put him to bed for the night. He had gotten the mess all over these toys he loves called Whiffer Sniffers. They are like stuffed animals but they all have a different scent. He loves them since he is obsessed with smelling things and we love them because they are actually something appropriate to smell.
As I was in the laundry room trying to clean off the sheets so I could put them in the washing machine Christian turned off all of the lights so he could show us the glow in the dark train set he had built. I thought I was going to jump out of the laundry room window! I was in the dark fumbling through these sheets covered in a huge mess. When the lights came back on I made the decision to throw the sheets in the garbage. I was done!
It’s almost midnight and my washing machine will run for the next few hours from the days events, but I’m looking at the two positives from today … Jim not only painted he wiped his own ass!
Tomorrow has got to be better!