About two weeks ago, Derek and I were informed that Greyson was going to need to take about two weeks off from the Autism Center he attends daily. The staff that works with him needed two weeks to regroup and find new ways to work with G so he would have less self-injury and aggression while he was at the center. Despite having 3 or 4 staff on him at all times, Greyson continues to have frequent seizures and severe irritability that sets off his self-injury in a variety of ways. Lately, the self-injury (I’ll just call it SI moving forward so I don’t have to type it anymore) is frequent punching his face/chin/mouth area, headbanging and smacking parts of his body. He is frequently causing bruising on his face and bleeding in his mouth from this and his medical helmet only protects his head, not his facial areas from the SI.

Due to the change in Greyson’s schedule he became so used to, when he gets up in the morning and assumes he is going to the center during the week, he immediately goes into a complete rage and tantrums for at least 40 minutes as soon as he is told he is “not going to the center today.” During the first week home, his least amount of time spent in a tantrum on a particular day was about 46 minutes and the longest was about 112 minutes. His tantrum on one day became so severe with aggression and SI, that Derek and I ended up having to sedate him with Clonidine to keep him safe. We have never had to do that before, but with his recent height and weight increase, we are having a harder time managing him. By the end of the first week, we were able to maintain his behaviors from critical numbers, down to lesser amounts, though still concerning.

Because G had off from the center and both Roslynn and Derek’s camps were off for the week, we decided we would take Tuesday and Thursday to go out and do a family fun day both days, in hopes that we would find something fun to do together. On Tuesday, we decided to go to Hershey’s Chocolate World. Roslynn LOVES Chocolate World and always wants to go, but G had only been there once before with us (he had gone another time when he was a young toddler) and we were eager to take him back to see how he did now that he is much older. I was very nervous this time around because he is now walking and is less willing to hold someone’s hand while walking, as he likes to be “independent” and walk/run everywhere, and it was significantly more crowded since it was summertime. As soon as we parked the car and everyone was situated and ready to walk, Greyson took off with his two aides right beside him, Derek and Roslynn trailing right behind and me last, taking my good ol’ time.

Once we got into Chocolate World, I instantly lost track of everyone, since I was a bit behind and there were so many people there. Who would have thought that the place that opened at 9 am would be so packed- literally shoulder to shoulder?!??! I sooner found the rest of my crew when I glanced toward the ride inside of Chocolate World that takes you on a “mini tour” of the factory and some of special things you will see if you were to go into the facility. The ride used to be pretty boring, but now they have spruced it up with some graphics and singing cows, so it’s more appeasing to the eye. After the ride is over, every single person gets the opportunity to sample an original Hershey’s Chocolate Bar, which Greyson was more than happy to do. He was very happy about this.

After we got off of the ride and had our sample Hershey bar, Greyson decided he wanted to do some shopping, so he took his two aides and went roaming around the gift shops within the building while Derek, Roslynn and I looked around for some good candy deals. We found some sweet deals and I went to check on G and the aides while Derek and Roslynn went to check out. I found G and he was getting really irritable again, so we went outside where it was less crowded and loud and he made friends with some of the candy bar statues outside. He was a bit relieved when it was time to go back to the car, since it was fairly hot outside and he was thirsty.

Once we were back home, G took a mini-nap and I cleaned up our lunches and was able to get some work finished. While I was finishing up work, Greyson went on the slip and slide we have set up outside for him and Roslynn, and both kids could be heard screaming their excitement from the living room where I was working from. I went outside after I was finished with some work, and G was having a blast with his two aides going up and down the water slide. I actually think his aides were having more fun than he was throughout all of this, but I digress. We spent much of the rest of the evening outside playing on the slip and slide, basically dragging G back in the house when it was time for dinner and to get ready for our nightly routine. Safe to say, it was a big hit at our house!

Thursday’s adventure brought us to BounceKraze in Lancaster. If you’ve read previous posts, you know that we have done two of Greyson’s birthday parties at BounceKraze years ago. The first time he went to the indoor bounce house place, he had a blast bouncing and running around trying to keep up with his sister. This time however, he did not enjoy the bouncing. Greyson wanted to run around the arcade games and try to win as many balls that he could from the claw machine. For the record, he went home with 3 that he won. We did have a small issue with a woman at the facility, who was there with her two young boys. If I had to guess I would stay the younger was 4 and the older was 9ish. Greyson was very excited about one particular arcade game and he approached the game fairly quickly. The woman was afraid that Greyson was going to hurt her son, so she put her hand up to his chest and pushed him back a bit, away from her son. Well Well Well……I wasn’t aware of this situation because I was making sure that Roslynn was okay in one of the bounce houses, but luckily one of our aides (I will call her “T” for this post), was able to smack the woman’s arm away and told her that she is not to touch G. She made it very clear that she is there to ensure his and other children’s safety and that she would not let him injure another child intentionally. I think the woman was afraid of T because T is quite intimidating- standing at 5’10”, muscular, very smart, intrigant braids in her hair and the perfect amount of Baltimore sass that any woman would be afraid of. T is fantastic though. She adores Greyson and Greyson adores her. She has been through a lot over the past year or so and we truly enjoy having her on G’s care team.

We spent about another hour or so shifting between the bounce houses and the arcade games and managed to only have one fairly decent sized tantrum while we were at BounceKraze. Luckily, the owner was there and she was so understanding and nice about Greyson and his diagnosis, she was more than accommodating when it came to him picking out prizes and when he didn’t want to keep his socks on inside the building. We enjoyed the morning there and ended up tiring both kiddos out for much of the rest of the day.

The final event of our busy week was Sarah’s bridal shower! My sister is getting married in 54 days and the bridesmaids threw her a “she’s been scooped up” ice cream themed bridal shower. We had a blast working all together to make the day super special for Sarah and had a nice time connecting with family who we haven’t seen in a long time. Next event is the bachelorette party leading up to the wedding on 9/20, which will be here before we all notice it!

Three more weeks stand between us and the start of school and I am really hoping that they can fly by. Greyson will be starting 3rd grade and Roslynn will be starting 4th. Just reminds me that time flies and makes me appreciate even more how much teachers do. This summer has given me the opportunity to spend more time with my two babies and to visit with my nephew, who is growing up so incredibly fast! The only thing I am not looking forward to, is the number of IEP meetings we will be having and how many times we will have to fight with the school for even the most basic things G is entitled to. I’m sure more exciting posts will follow over the next couple of weeks, stay tuned!