Audio

The Journey Begins

Narration of my first blog post, dated from June 2018. “The Journey Begins” briefly explains my pregnancy and the birth of Greyson, essentially where our story begins. Enjoy!

Recharged

COVID-19 really messed up our ABA (Applied Behavior Analysis) services Greyson had been receiving for the past 2 1/2 years. Effective mid-March, the company we were using was told that they would be stopping all in-home services, including services provided by BCBA (Board Certified Behavior Analyst) and RBT (Registered Behavior Technician) providers. Greyson’s primary insurance (who was in-network with the ABA provider) was set to term on 3/31/2020 anyway, so we considered this a sign to find another provider that participated with his new insurance. We consulted with our family care coordinator at Greyson/Roslynn’s Psychiatric provider’s office, and she had recommended we submit a request to the insurance for a new provider. By mid-April, I was receiving notification that Greyson was going to start services with a new agency, Pennsylvania Comprehensive Behavioral Health (PCBH). I did the intake phone call with a Behavior Specialist Consultant (BSC) and had a few phone consultations with her until I requested clarification on the prescription that was sent over by Greyson’s psychiatrist. We had been under the assumption that G was recommended for ABA services, rather than IBHS (Intensive Behavioral Health Services), which was notated correctly on the prescription. Our family care coordinator contacted PCBH and we were set up with a BCBA almost immediately after the phone call was placed.


Through the months of May and June, all BCBA contact was being held via Zoom, which is helpful in some ways, but not if you are trying to provide one-on-one support for a highly anxious child, who has serious SIB (self-injury behaviors). Our BCBA (I will call her “J” for privacy reasons), finally was cleared to come out to the house last Friday, which was her first true interaction with Greyson. She informed Derek and I that our new RBT (I will call him “D” for privacy, too) would be starting services with Greyson effective (this past) Monday. This was a much needed sigh of relief, as I have been home alone with him for the past four, almost five months, with barely any behavioral support.

Greyson had been acting odd over the past week or two, so I wasn’t surprised when he didn’t really want to interact with J, or play with her. He did not show many behaviors during her one-hour meet & greet, but it was later in the afternoon, when he is typically calming down for a movie, while I cook dinner. I reassured J that she should not expect him to behave like this, because he typically has a lot of energy and a lot of needs.


Monday rolled around and I was nervous for the new RBT to start. I always am typically nervous when new people come out, only because I’m afraid of what they will think of our crazy, dysfunctional little family. Luckily, J was coming out with D for the first time, so she could introduce us and get us acquainted with each other. Greyson was asleep when they both arrived. He had a tough weekend of little sleep and a medication adjustment, which had thrown him off and provided a bumpy start to the week. Greyson slept almost the entire time that D and J were out at the house, only waking up the last 45-minutes of the session and visibly annoyed people were here talking about him. Thankfully, Derek had come home by that point and was here to help Greyson’s transition from sleep to being awake, which has been terrible over the past week or so. D was able to see Greyson semi-happy and semi-awake, with little whining, but still fairly lethargic. Again, I reassured D that this was not the typical Greyson and to definitely expect him to be different tomorrow.
Tuesday D came out at his scheduled time and Greyson had woken up from his nap about 10-minutes before his arrival. I was hoping he was going to have a good session, but sadly I was wrong. Greyson was fussy, exhausted, not eating (not that this isn’t an ongoing issue) and was not feeling the urge to do much of anything except lay on the floor, groaning whenever we tried to interact with him. I thought this was a little odd, but didn’t think too much of it, maybe just because he had sleep to catch up on from the weekend.

Tuesday evening, Greyson had an even worse night. He was up frequently and was extremely aggressive, both physically and verbally, but felt the need to wake up the entire household and our very kind neighbors next door, with his loud shrieking and pounding on the walls with his fists. I felt like something was causing him to act this way, not because of denied access or demands being placed on him, the reasons for majority of his tantrums, but because of something more complex. Feeling horrible for Derek who had to be up for work in a matter of a few hours, I took Greyson down to the living room and told Derek to get some sleep. I was able to finally calm G down by 6 am, which was perfect for my favorite morning news show, Morning Joe which I can never watch peacefully while the children are awake. Both kids slept until about 10 am, which is seriously unheard of, but I soaked it all in while I could.


Weekly, Roslynn participates in a one-hour play therapy session via Zoom with a Licensed Clinical Social Worker, so she can work on appropriate turn taking, learning coping skills and just to chat with someone regarding how her brother’s disability impacts her and our family. I typically try to join in these sessions, so that I can help keep her on task and to connect with the therapist regarding how she has been progressing and any new concerns we have regarding her. This Wednesday was odd. I knew something didn’t feel right. We had grown accustomed to our typical routine over the past few months, always having G’s emergency medications on hand, but never really expecting to have to use them, since his last BIG seizure happened in September 2019. But of course, just when things become comfortable, that’s when the storm hits.


I noticed that Greyson was extremely lethargic, grumpy and was extremely sensitive to me being around, touching or evening talking to him. I did not want to push him and cause a tantrum during Roslynn’s session, so I put on Moana, which has been his favorite go-to movie over the past few months, and gave him some juice and grapes to keep him content. While I was adjusting the sofa pillows like the OCD maniac I am, I noticed Greyson’s hands and feet had a blue hue to them, similar to the shade of blue he turns when a tonic-clonic seizure is coming on. Greyson was laying down on his little Mickey Mouse cot, when I noticed his hands and feet. I went over to him to touch them, just to confirm that he wasn’t blue due to being cold. He was warm, even borderline hot.

Before I noticed anything “off” about him


I immediately called Derek and voiced my concerns. He was working from his Church office in Lancaster, about 15 minutes away (10 if you drive like Derek typically does). I have never been home alone with G when he had a tonic-clonic seizure, so I wanted to be sure Derek knew what was going on, in case I needed to call 911 and arrange someone to watch Roslynn. I was also extremely nervous and scared. Like clockwork, as soon as I hung up the phone, G began to have muscle tightness and minor spasms in between the episodes of muscle stiffness. He was coming in and out of consciousness and attempted to stand up and walk in between these spells. He appeared extremely dizzy, almost in a drunken state, falling over himself and walking in a manner that made it look like he had spent too much time on a merry-go-round. The spasms continued for over 30-minutes. I didn’t think it was necessary to give him his emergency medication because he was able to pull himself together between the episodes of muscle stiffness and attempting to walk. I was unsure if this was actually a seizure or if it was something else, but as soon as he was done, he fell asleep for four hours. He typically gets exhausted after a seizure, so his long slumber confirmed my fear.

In between muscle stiffness and trying to walk. He’s visibly out of it


Mr. Duke was by his side the entire afternoon. As Greyson slept comfortably on his Mickey Mouse cot in the living room, Duke climbed on and acted as a “big spoon”, in the popular big spoon/little spoon technique. D came out to the house in the midst of the craziness and had to leave 15-minutes into Greyson’s sleep (insurance and company policy reasons) and I knew that waking G up at this time was NOT going to go well. I allowed Greyson to rest comfortably, constantly monitoring him until Derek got home later in the afternoon. I became so comfortable with not having to “worry” about G having a seizure, since he had been (tonic-clonic) seizure-free for a few months, that I forgot the warning signs and the typical behaviors he (and Duke) show before a big one. The past two weeks were a giant build-up just leading up to the seizure. Increased aggression, hyperactivity, self-injury, crying, fussiness and no appetite should have alerted me that something was coming. Something big.

Post seizure crash


Flash forward to 5:30 pm last evening. Greyson woke up a COMPLETELY DIFFERENT CHILD. It was as if Greyson’s brain received an electric shock and completely recharged itself. He was happy, energetic, laughing again and actually ate 2 slices of pizza for dinner, the most food he had eaten all week so far. I was hopeful that the newly recharged Greyson would last, but I didn’t expect him to last all night. As we slept, Greyson went through a handful of Disney movies, ate two bags of regular M&M’s (and maybe another slice or two of pizza), and managed to keep himself occupied from 11 pm until 4 am, when he finally fell asleep. He was legitimately happy and content with everything and anything. It was not like the Greyson we have had for the past few months. Despite the limited sleep, it has been a much needed change to our daily routine, which typically consists of hours and hours of crying/headbanging day in and day out.

The seizure yesterday also reminded me that every single day is a new day and we should always treat it as such. We never know what will happen or when, but we always need to be on alert for a potential event such as yesterday. We are not naive. We know that this “freshly recharged” Greyson will not last. He may be here with us for a few more days, a week or so, maybe even only a few more hours, as we never know when another build-up will begin. We do know that he will most likely have another build-up over the next few weeks, but we will enjoy the “Happy Greyson” and very chatty (gibberish speaking) boy as long as it lasts.


It seems that Roslynn and Duke are enjoying “Happy Greyson”, as well.

My happy babies, playing tickle monster.
More tickles. Greyson loves when Roslynn is the monster.