So much has happened in the past two weeks, that it honestly feels like I haven’t given an update in months….
About ten days ago, the 2020-2021 school year was going to look a little like this- I would homeschool Roslynn for the first half of kindergarten, with guidance from the Penn Manor School District virtual school. Greyson was set to learn from home as well, with a teacher coming out to the house daily to see him, specialists and his classroom teacher doing weekly check-ins and he would receive his ABA services in-home too. This plan drastically changed ten days ago. On Friday, August 21st around 3 PM.
ABA services have been wacky recently, due to COVID-19 and changes with staffing, etc. so I received word that Greyson’s RBT (who had been spending 4 hours a day with us, providing essential services) was moved around to other clients, leaving majority of Greyson’s hours unstaffed. This meant that I was going to be teaching kindergarten from home WHILE watching/tending to Greyson, who really needs one-on-one care 24/7. Derek and I slept on it and after much debating, we decided it would be in Greyson’s best interest to send him back to school. It was such a difficult decision to make and I still wonder to myself if it is a good choice. I must say, Greyson riding the bus from 8:10 and not getting back until 11:50, is a much needed break for me, even if I’m teaching kindergarten at that time. Greyson now will have an opportunity to have his PT, OT, VB and speech in person/at school and will continue to have ABA services from 4-6 PM.
We informed his classroom teacher on Sunday, August 20th that Greyson would be returning to the classroom (after telling her for months that he would be home, telling the bus company that he didn’t need a ride and setting up weekly consultations with staff for his check-ins). Luckily, she understood the predicament we were in and after rushing to get papers signed, forms in from doctors, medicine clearances, etc., we were able to send G back to school on Wednesday, the 22nd. In a typical school, there is absolutely no way that would have been done in two days- just goes to show that the IU in Lancaster has great staff members, who don’t mess around! Excitingly enough, he will begin to ride the bus tomorrow. Fingers crossed for a safe, smooth and easy transition into that.
Roslynn had her first day of kindergarten today! It’s hard to believe that she has gotten so big and is already five years-old and in kindergarten. Due to the overwhelming demand for virtual schooling, the school district’s programs for kindergarten and several other grades were not equipped to manage so many online students. While we wait for her modules and kindergarten classwork to be added to her portal, I had to improvise activities for today and most of this week. Now, I DID at one point want to be a teacher, but after working in a kindergarten classroom for a year, I knew there would never ever be a day when you’d see me teaching a class full of kids. It certainly takes a village to raise one child, but boy does it take one hell of a person to teach 20-25 hyperactive children.
As we wait for the school district to get everything together, I will continue to improvise and go with the flow of activities she likes to do, particularly on ABC Mouse and other educational programs. Today for example, I taught her the different between capital and lower-case letters, had her practice writing them with and without composition lines, then got her accustomed to using a mouse and laptop. She only cried once when she had a really tough time clicking and dragging items on the laptop. Overall, I think its going to be a lot of work, but I am hopeful that this is the safest option and it also allows her to work at her own pace, which is always very good for her.
Gone are the days that I was able to do small home improvement projects, as I’ve been doing for the past two weeks. I’ve traded in my hammer and paintbrush for a computer and curriculum guide. I’m actually legit proud of myself for doing these improvement projects, mainly things that I’ve wanted to do, but didn’t have the time when I was working full-time.
I’m hoping that I can give Roslynn a positive kindergarten “environment”, even though she is home and that I can live up to the name that she has given me, “Teacher Mommy”. I’m also hoping that the computer system gets its act together soon- one can only make up pretend lesson plans for so long! Sending prayers and good vibes to all those who are homeschooling, or making the hard decision to send their kiddos back to school.
Evaluation day in Baltimore for a diagnosis of Sturge-Weber Syndrome…..or was it? Follow us on our mini-trip down I-83 to Baltimore, MD where we receive some interesting news about Greyson's condition.
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.
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.
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.
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.
In the spring of 2018, Greyson was written a prescription for a fitted medical-grade helmet, to keep his head safe from the headbanging he does. In 2018, his headbanging was minimal- typically only when he was mad or upset about something and it didn’t last very long. Fast forward to December 2019 and his minimal headbanging turned into severe headbanging, leaving marks on his forehead, even severe bruising. He began to headbang even when he was happy, which Derek and I assumed was a sensory output that we needed to get under control.
He began to really hurt himself in early 2020, which prompted our doctor to write another prescription for a second fitted helmet (his first helmet had bit the dust in summer 2019). Due to still being employed by WellSpan in January, I was encouraged to go through a WellSpan medical supply company to get his helmet. I contacted their office and had the pediatrician’s office fax over the prescription. We then waited for any correspondance from the supply office, which seemed to take abnormally long. Every time I would call, there were lots of different people I was transferred to, nobody knew the status of the helmet and couldn’t figure out what the hold up was. I had extra time on my hands in early March, after I was no longer employed, so I decided to get mean about the order. I contacted the higher ups from the medical supply company and spoke with the manager of the individual responsible for Greyson’s helmet order. I informed her that I had been calling for over 2 months, trying to get the helmet status and that we were in dire need of the helmet, due to an increase in self-injury. Within an hour, I had a return phone call from the staff responsible for the order. The staff member stated that he had attempted to contact me twice by phone in the past two weeks, which was not true, or else I would have taken his call and had Greyson’s helmet in hand. After voicing my concern and informing the staff that this was a long overdue order, I was taking measurements for Greyson’s new helmet.
Due to COVID19, the supply company was closed to the public. I had received the staff member’s personal cellphone number and had a detailed update when the helmet was ordered, shipped and received. Though I truly try to be level headed and kind, sometimes it does pay off to be nasty, I guess.
The helmet came in on a Tuesday and was picked up by my in-laws the same day (they lived closer to the supply company than we do). Back in 2018 when we were using the helmet for his minimal headbanging, any time we brought the helmet out, Greyson stopped hurting himself almost immediately. But as his self-injury increased, simply showing him the helmet no longer worked. We did not have Greyson wear his helmet at all hours of the day, as he was really only needing it when he was transitioning between activities and when he upset (which is when the headbanging was really happening).
June began with another change in our family’s schedule, I started to work again. Prior to working, I enjoyed three months of being a stay-at-home mom and had both Greyson and Roslynn on a consistent schedule. Greyson’s tantrums had decreased and he appeared to be happy and content with the schedule we had established. When I began working, even though it was part-time from home, Greyson’s schedule was completely thrown off. He no longer had a set breakfast/lunch time and no longer settled for a nap around 11:30am-12pm like he had done for the past 3 months.
Fast forward to this past Thursday. I was feeling really good about scheduling and the tasks of the new position, but I knew that they kids were both having a difficult time with the change. I finished working at 1 pm on Thursday and came downstairs to hang out with the kids and get them a snack. We had no furniture in our livingroom because we had a new sofa set ordered and pending arrival. The kids LOVED the extra space in the room, running around and taking advantage of the empty area. I thought Greyson was pretty low-key and mellow Thursday afternoon, even falling asleep around 3 pm, which wasn’t typical of him. I chalked this up to him being tired and not having a nap yet, so I let him lay down for awhile.
I woke Greyson up from his nap around 5 pm, before I made dinner and he was his typical “threenager” self, not wanting to wake up. Us trying to wake him continued well into dinner, then well into the nightly news. Around 6:45 pm, I told Derek that he (Greyson) had to get up and eat something, since he didn’t have snack for me earlier in the afternoon. Derek sat next to Greyson and began to rub his back, neck and head to wake him up. Startled, Derek jumped up and said that something was wrong with Greyson. I immediately thought that maybe he was having a seizure, so I was surprised that he was awake and walking when I looked up. Derek brought G over to me and told me to feel his head. I did. I was shocked. Greyson’s head felt like Jello. I couldn’t feel any sort of skull. Just softness.
Being the Queen of WebMD and Google, I looked up “Why is my child’s head soft”, which only returned articles and information about newborns and their soft spots. Having given up on the internet, I called the pediatrician’s office and was connected with the on-call nurse. After she consulted with the doctor on call, the nurse prompted us to take Greyson to the Emergency Room at LGH. An all too familiar feeling, Derek got G ready and I packed up his backpack with the essentials (meds, diapers, etc.). I decided I would stay home with Roslynn, who had already begun to fall asleep and because my immune system is not good and COVID is still lingering, I figured this would be the best option. The next bit of information is coming from Derek, so I’ll summarize what he had explained to me.
They got to the ED at about 7:30 pm and it was packed. Individuals who had symptoms or were suspected of having COVID, were placed in a separate area of the hospital, to avoid contamination with those who did not have a COVID concern. He checked in with the receptionist at the front desk, who knew that they were coming, per our pediatrician calling and informing them. He took Greyson to the section of the ED which was a little more secluded from the rest of the ED and it was easier for Derek to confine him in that spot, rather than letting him run wild among the injured and sick. When they were pulled back into triage, the staff member obtained as many vitals as he could and prompted Derek to bring G back into the lobby area until a room was ready. In the midst of being shuffled around, Derek observed a man getting agitated because his mother was suffering from a stroke and still had not been registered. The man became so incredibly irritated, he did not notice that his mother was taken back at first, and proceeded to take his temper outside to the street. Lime street in Lancaster near the ED is a cute little area, stuffed with different physician and specialist offices, most of whom are affiliated with LGH. In the time we live in, the man became so upset, that he was tackled by police who were called, in addition to the ED security staff. I guess it provided much entertainment for all in the ED, since the area is comprised of nothing but glass windows, facing the area where this man was having his fit.
Once Derek and Greyson were called back to the exam room, the doctor came in and felt Greyson’s skull. He too agreed that something was wrong and that his head should not be swollen and tender like it was. He ordered a CT scan immediately and Derek placed the helmet back on Greyson’s head for safety. Staff came in awhile later and attempted to sedate Greyson with a nasal spray (it worked really well for him at CHOP, so Derek had consented to attempting to try that again. This time however, it didn’t work. The staff placed Greyson in a papoose, similar to what he has at John’s Hopkins when he has laser treatments for his face, and got the images that they needed for the CT scan.
Turns out, due to severe headbanging earlier in the day, Greyson had a huge subdural hematoma between his skull and scalp and a likely concussion. The jello type feeling in his head was collected blood, just hanging out in there. Because his head was not actively bleeding and his brain was not impacted from what the doctors could see, he was sent home. After a follow up conversation with the doctor at the ED and the Neurologist, it was recommended that Greyson now wear his helmet at all hours of the day, whether he is happy or sad, just for extra safety of his head. In the meantime, we have to observe him closely until the hematoma is completely healed, to make sure that he doesn’t have any nausea, vomiting or other complications that accompany a brain injury.
The boys got home around 11:30 pm and I had already been weighing my options when it came to being sure that Greyson was getting the appropriate structure and supervision he needed during the day. I made the difficult decision to step down from my new job and be the stability that Greyson (and Roslynn to an extent) need. Upon submitting my resignation on Friday, the owner of the business I was working for, was completely understanding and as a mother to young children herself, could really empathize with my situation. She stated that due to the situation, I would be able to keep my job within the company, but I would be an “as needed fill-in” until the fall, when I could most likely do the company’s billing and other miscellaneous tasks in the evening, after Derek is home from work. I am so appreciative that I am able to stay on staff there, and hope that once Greyson is back in preschool and stabilized, I may be able to restart my tasks within the company.
I’ve also decided to come out of my “retirement” from teaching voice lessons, and really put my time and attention into that for the evenings. Its a flexible position where I am in control of my own schedule, teaching as many students that I want to. I revamped my marketing skills and reached out to some former students, to see if they would like to study again. Needless to say, I’m thinking I could potentially have a full studio again by the end of summer. I know that this is a good move for our family and will give the kids the attention they need during the day, and still allows me to get out of the house and do something on my own a few nights a week. Contemplating changing my LinkedIn account to “Full-time Mom, Fill in admin staff and optimistic musical entrepreneur” as my current job. Maybe I need to work on that job title a little bit.
Whether you agree or disagree with medical marijuana, don’t believe in it, swear by it or are not educated in it, I do not care. This post is therefore not a lecture, recommendation or meant to sway one’s opinion in either way. This is strictly our family’s experience with the controversial “drug” and the reasons why we have chosen to give it a try for Greyson.
So, I guess it’s best to begin with explaining the entire process of obtaining a medical marijuana ID, prescription and products.
First of all, obtaining the caregiver/medical marijuana ID is like going through Fort Knox. You have to fill out an application online and get your criminal background/FBI fingerprints done. Even if you’ve got all your clearances and have been fingerprinted for other reasons, you have to get a specific category for the fingerprints, so other prints don’t count. Once completed, you wait for the results. In the meantime, we looked up local doctors/offices that are in the state system to write prescriptions for marijuana. After sifting through all of the prescribers, we found an office in Lancaster that completed an evaluation to show medical necessity for the marijuana. After the evaluation, it took a few weeks to have the doctor send the evaluation report to the state for review.
Medical marijuana scripts are not like normal scripts- you don’t go to a pharmacy with a written prescription and pick up the medicine. Instead, you wait for the medical marijuana caregiver ID (caregiver ID’s are for individuals that are designated to obtain and administer marijuana to minors, consumers, clients, etc.) to come in the mail. To determine the dosage and combination of THC vs. Cannabis, you have to meet with a registered pharmacist to discuss specific medical history and information before the script is filled.
We began researching the option for medical marijuana in the fall last year, but let it go for a bit because of the holidays and work was getting busy. When the topic came up again earlier this year, I agreed to Greyson trying the drug, but I wanted Derek to take charge of obtaining the information, card, etc. since I have managed all other appointments/medications, etc. over the past few years. Derek obtained the prescription, did the consults, fingerprints and all. The entire process took about 6-8 weeks, but it moved fairly quickly.
We started Greyson on a specific regiment of marijuana, combining pure THC and Cannabis oil. He receives the medication via a dropper, three drops twice daily, with an optional third dose in the middle of the day, if needed. So far, he’s been on the medicine for 3 days and it has made a HUGE difference in his behaviors and aggression. This past week, there was no way I could take both kids outside by myself without Greyson trying to run off. By yesterday, Greyson not only allowed me to hold him for about 15 minutes, but he also stood in one place for about 20 minutes outside, with zero attempts to run off. In the 3 years, 8 months and 3 weeks that he has been alive, I have never seen him so calm and happy!
Today, we visited my in-laws, who have an awesome back yard/playset for the kiddos to run around and play on. I was nervous at first because Greyson was so excited and happy and immediately darted from the car as soon as the door opened. Luckily, he ran immediately to the swing set and sliding board. I haven’t seen him follow any sort of direction before, especially commands involving stopping and keeping close proximity to us. This kid followed almost every direction given to him. He stayed close by and had so much fun being outside for awhile. At one point, I even thought to myself, “wow, this is what it feels like to have a typical boy”.
I have read arguments and different opinions regarding medical marijuana. We have discussed the pros/cons with his medical providers and determined that it was worth trying, and I am so happy with the results thus far. There certainly are moments when Greyson appears to be really out of it, or “drugged”, mainly when he has his seizure meds/night time medicines that already make him drowsy.
Stay tuned, but for right now, we are hoping that we may have actually found something to help with his impulsiveness, irritability, aggression and self-injury.
Having fun outside at Grammy & Pappy’s house!
Roslynn has also started weekly outpatient therapy with a social worker, to address her anxiety and fears surrounding Greyson and his behaviors. She is still afraid of him when he is throwing a tantrum and is hypersensitive to loud noises. She’s been really afraid to do much of anything by herself recently, especially using the bathroom, going up or downstairs alone. Though she’s only had a few sessions, she has already learned that jokes help her focus on things other than her brother and that taking deep breaths help her when she feels sick or scared. Lots of uncertainties also surrounding the pandemic and whether mommy will be going back to work or not, have also made things a little bit more nerve wracking here, too.
I have been thinking a lot about the saying that most moms have heard: “the days are long, but the years are short.” And boy, do I really get what they’re saying. I feel like the stars are finally aligning and maybe, just maybe, we are getting somewhere.
Skimming through my posts from 2019, I realized it was a lot more eventful than I thought. No wonder I’m exhausted every single day!
Exactly one year ago, I was reminiscing about 2018, which was an awful year. Awful may actually be too nice. We lost several family members in 2018, and we continued to get more and more confused about Greyson’s behaviors/meds/condition/treatment.
When we started 2019, Greyson was refusing clothing and eating his own feces. We also began 2019 with absolutely zero visible seizures. Hard to believe that G only began having Grand-mal seizures in May of this year, it definitely feels a lot longer.
Along with the first grand-mal seizure, we had lots of “firsts” in 2019: first dentist appointment, first family vacation since being diagnosed, first day of preschool, first ER trip, first extended EEG and first set of stitches. Despite the chaotic day-to-day events in 2019, I am so relieved that we didn’t have a repeat of 2018.
We also learned a lot about Greyson’s condition over this past year. Along with the diagnosis of Autism, G has several different co-morbid conditions that seem to all be impacting his every day life, including Periventricular Leukomalacia (white matter brain disease caused by brain damage at birth) and the genetic mutation of the STAMBP gene. We still have a far way to go, but we have finally settled on the idea that Derek and I may never know what truly is going on with Greyson and what the future holds.
Since my last post, Greyson has begun new medicine for his (possible) Electrical Status Epilepticus in Sleep (ESES) diagnosis. We are currently on a trial medication named Onfi for this particular condition, which is essentially when an individual has continuous spiked waves in the brain while they are sleeping. The plan for this medicine is to continue the Onfi and the Vimpat (his daily anti-convulsion med). We will have another 48-hour EEG in February, this time with admission into CHOP’s pediatric neurology program in Philadelphia. We are also waiting for more diagnostic testing of G’s DNA/Genetic Samples. With the development in science and research on genetic conditions, we are hopeful that someday we will have more answers about the STAMBP gene and Mic-Cap Syndrome.
Roslynn had a tough second half to the year, with a lot of G’s aggression being taken out on her. Luckily, she has been playing and interacting much better with Greyson over the past two months, and I am definitely seeing more reciprocal play between them. She is enjoying her weekly dance class, preschool, playing with her cousins and walking my parent’s puppy, Charlie. She is set to begin kindergarten next year and though I am not ready for that, she certainly is. She loves to learn and has a fun, sweet and gentle personality and is the best behaved 4-year-old I know.
Derek has been extremely busy with his (not so) new job at T.W. Ponessa & Associates. He has been busy seeing clients, completing Functional Behavior Assessments (FBAs), making data charts, token systems and most importantly, enjoying having a job that he loves to wake up and go to. I am so proud of him and his accomplishments and look forward to what 2020 has in store for him.
Last but not least, I have been keeping myself busy with the typical: working full-time, managing two children and one grown man’s schedules and appointments and keeping my sanity (or the best I can fake it!). I am going into my 8th year at CADD and loving my new desk/tasks that the end of 2019 has brought my way. I’m looking forward to 2020 and the possible professional and personal endeavors that may come my way.
I always joke that once you hit 25, New Year’s Eve doesn’t matter anymore. I’m honestly impressed that I have enough energy to type this and that I’m not zonked on the couch right now. Kids should be in bed soon and I will be ringing 2020 with Derek, most likely by both of us passing out (from exhaustion) by 10 PM. I am more than okay with a quiet end to 2019 and hope that 2020 will bring peace, comfort and happiness to our family and all our friends, family, supporters, coworkers and all who support us on a daily basis.
Saying goodbye to 2019 by posting some of my favorite photos and cheers to 2020 with sparkling apple juice!
Greyson has gone from 3 seizure meds, down to 2 in the past month. This transition has caused him to act out, become extremely impulsive, aggressive and nocturnal, though he doesn’t really sleep during the day either.
Derek and I can deal with the lack of sleep, but the aggression is the worst of it. It all started with aggression towards Duke during meals, then during tantrums, but now anytime G is around Duke, he’s biting, hitting, pulling on or trying to tackle him. The aggression then began to target Derek and I, but as former TSS, we can handle anything. When the aggression became centered towards Roslynn, we knew it was best to remove her from the situation, for her own safety.
Nasty bite per Greyson
The hardest decision that we have had to make thus far has been moving Roslynn out of our house, temporarily. My parents have been so incredibly supportive and opened their guest room door to Roz, so she wouldn’t be attacked by Greyson anymore. Watching her curl-up in a corner, violently shaking, crying and screaming “he’s gonna get me, help me mommy!”, was a push over the edge that we needed to make this decision. My parents presenting this offer also came at the best time possible, after an extremely difficult two weeks. I thought that maybe Roz would be upset that she was going to be away from us, but she’s living her best life at Nana/Pop-Pop’s house. The best feature of staying with them, according to Roslynn, is the KING SIZE BED!! She is loving having such a big bed all to herself and is getting some much needed, overdue attention.
Roslynn and I are glued at the hip. She is the baby girl I always hoped for: a 4 year-old little genius with an amazing ear for music. She is so timid and kind, and she has the sweetest little voice and personality. This has been very difficult for us, but especially for me. I truly feel incomplete and empty without her, though I see her every day and call/FaceTime her multiple times a day. Luckily the weekend is coming soon, which means I can stay with her for sleepovers in said King Size bed! This is all temporary, just until Greyson is stabilized on his medications and the aggression has subsided or at least becomes manageable.
Moving onto some more happy thoughts…..
My favorite time of year has finally arrived. I love Halloween, Thanksgiving and the fall. I adore the colors on the trees, the crisp air and the smell of wood burning in a fireplace. This year, Roslynn has chosen to be Snow White for trick or treat night, but that has changed almost daily. Greyson managed to make it to one house last year, before we had to return home due to a giant tantrum. We have stuck with the Star Wars theme for the past two years, but need suggestions for this years costume.
Roslynn really hopes that he will go as Dopey….though I don’t think G would keep the hat/ears on, or any part of the costume either. Naturally I am so indecisive, so I never know what the kids should go as- suggestions are appreciated!
Getting through this tough time with med transitions, growth spurts, no sleep and full-time work, takes a strong team. Derek and I know how extremely important family is, so we agreed before getting married, that we wouldn’t bring kids into the world if we weren’t prepared to go through it together, for life. I’m glad to say that we are pushing through, as a team, to conquer these rough times. It seems like most parents that have kids with special needs, tend to end up divorced directly because of their child and the stressors that accompany a disability. I see it every single day at work: many families that come in without the other parent being involved, or a nasty custody battle is taking place over the child. It just makes the already difficult situation so much worse. I’m extremely blessed to have such a wonderful husband, family, in-laws and friends, who all support us and provide us with the best opportunities and care for our children. We could never imagine doing this without them!
In the Halloween spirit, I do encourage those not as familiar with the “Blue Pumpkin” initiative, to do some research. The best way we can all learn about those who may be different from us, is by educating ourselves and others. This is how acceptance and understanding becomes contagious. Let’s start a virus of Autism education for those unfamiliar with the condition, and spread the only way to “cure” the symptoms of ASD- acceptance, love, understanding and kindness. Even the smallest gesture goes a far way.
Now that we have been back from South Carolina for a few days, I finally have a moment to post about our trip, and the days leading up to it.
My family typically schedules our vacations far in advance, which worked out well in this instance, since I needed time to do some research about traveling with an ASD child. Last time we were at the beach, Roslynn was 2 and Greyson was only 11 months old and not walking yet. Now that he is bigger, faster and stronger, I needed to make sure I had everything we would need for our venture south.
After months of googling, following different posts on Pinterest and getting advice from other parents of toddlers and ASD kids, I felt confident I would have everything set for the trip. We were leaving very early on Friday, June 21st, so I had a large list of things to get done beforehand, such as:
Taking Greyson to Baltimore for a med increase
Refilling all of Greyson’s meds, so we were covered for vacation
Work as many hours as possible into 3.5 days
Prep the automatic feeders/watering devices for Carlie
Prep the house for us being away for 9 days
On Wednesday, June 19, we had squeezed ourselves into an emergency appointment with Dr. Comi down in Baltimore for Greyson’s recent seizure activity. After the office calling three times to change the appointment on us, we managed to get down there and discuss the seizures with her before we left for vacation. After describing (and Derek role playing) the seizures, Dr. Comi agreed that it would be in our best interest to:
Catch a seizure on video
Increase G’s meds over the next two weeks
Contact JHU to get a skin biopsy with Dr. Cohen, to look for the second variant of the STAMBP gene
With all of the recommendations and increased meds, I felt that we would be okay to go to SC without any issues.
We left on Friday morning around 5 am. Luckily both kiddos were still drowsy, so we were able to drive for awhile without any crying/screaming. Once we hit Virginia, that all changed. We had G crying and trying to escape from the car seat and Roz upset that she wasn’t watching every movie that she wanted to watch. My family decided to stop at a restaurant for lunch, mid-state Virginia. G was already pretty fed up with the car and being confined to one area, that he was having a tantrum before we got inside.
The hostess informed us that it would be about a 20-30 min wait, so Derek and my sister took G outside to walk/run around until it was time to be seated. Roz and I stayed inside and wandered around the crowded “gift shop” type store that all Cracker Barrels feature. I managed to avoid having to buy Roz any toys or candy from the shop, so I was hopeful for a quiet(ish) meal.
Because there were 14 of us, we were placed at a long table in the rear of the restaurant, where 6 other tables were also occupied. Immediately upon placing G in the highchair, G lost it. He began screaming, crying, hitting, biting and headbanging at the table. I am still easily upset and embarrassed when it comes to tantrums and behaviors in public, that I was completely mortified that he was “ruining” other patron’s meals by his fit. Derek and my sister Sarah took G out of the dining area and began to walk him around to settle a bit. Once our meals were disbursed, they rejoined us to eat. Unfortunately, it was past the point of no return for Greyson. He refused to eat, was throwing things and hitting Derek and my mother; who were sitting next to him.
In the midst of my embarrassment, I did not realize that 4 of the 6 other tables had already been moved to another table, or took their food to go. Only after the waitress attempted to calm Greyson with french fries and ketchup, did I notice the empty section of the restaurant around us. I felt tears coming to my eyes as my parents reassured me that people are ignorant when it comes to special needs children and that G was fine. The worst of all was a table filled with 6 or 7 elderly patrons, who made a scene as they requested their table be moved immediately away from the section we were in. Despite the waitress’ attempt to make us feel comfortable and welcomed, I came to the conclusion that there must be absolutely no autistic people in Virginia.
Once lunch as over, we quickly left the restaurant and packed back into the car and made our was to Smithville, NC, where the hotel we were staying at overnight was located. I was hoping that G would settle down before we checked into the hotel, but he unfortunately didn’t. He screamed, cried, headbanged and was aggressive much of the afternoon/early evening. He also was up repeatedly in the middle of the night, crying, which typically is a sign he’s having seizures while he’s sleeping. We survived the night and left early the next morning, heading for Hilton Head Island (HHI).
So happy he’s on vacation
I prayed that evening for a quiet, fun and relaxing trip and I was relieved to wake up with a happy Greyson, finally. We made it to HHI around 2:00 pm and unloaded the cars. The guys went over to a grocery store on the island, to stock the fridge and coolers with food for the week. Greyson was much more happy running around a big space and I think he liked having a little more freedom than the hotel/car permitted.
We typically have the same routine everyday on vacation: wake up, breakfast, beach, lunch, pool, showers, dinner. All of these events taking place over a 10-12 hour period. Shockingly, I managed to read an entire book on the beach in 3 days. I felt so accomplished and happy that I finally was able to read the murder mystery paperback that sat untouched on my bookshelf for two long years. It was so wonderful. The days were predictable, following the same routine on Sunday and Monday.
Monday afternoon, Derek and I took G up early to the house because we all were getting burned from the hot SC sun (even with SPF 70+!). I popped into the shower first and almost immediately upon doing so, I hear Derek tell “Greyson is having a seizure!”, from the living room. I jumped out of the shower and grabbed my phone and began to film the seizure to send to Dr. Comi.
Please note that this video may be upsetting to some and I apologize for his bare bum- we need him without a diaper on to administer meds during a seizure.
Even though we increased his anti-seizure meds 5 days earlier, I was still clueless as to what triggered the seizure, and why the medicine wasn’t doing its job. After sending the video to Dr. Comi and backtracking the previous hour or so, we were still puzzled as to what caused this to happen. The next day or so, we decided to keep G inside the house and monitor him because we didn’t want him to have another seizure while we were at the beach and run out of meds.
So, after losing a full day at the beach/pool, our routine proceeded as planned for the remainder of the trip. Derek and I even tossed in a morning over at the Island Playhouse, which is an indoor bounce house playground and rock/rope climbing walls. The kids loved it! I swear G didn’t come out of away from the bounce houses until Derek went in and physically carried him out to leave. It was a highlight from the trip, and an awesome memory we made as a family.
Roz having a blast in the pirate bounce house
G in the large bounce house
As much as vacation was enjoyable and fun, I was glad to get back home to normalcy, structure and our first babies. Of course, now I’m ready to go back again !
One of my favorite childhood books growing up, was Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst. The book (which was later adapted into a movie in 2014) revolved around a little ginger kid named Alexander that was having a pretty crappy day. I would force my mother into reading the book to me during our weekly trip to the Lancaster City library, and despite having read it to me several times, she always obliged. I used to believe that Alexander had a terrible, horrible, really bad day everyday, and that his day couldn’t get any worse. I also used to think I was just like Alexander whenever I was having a bad day…..pretty dramatic for a 5 year-old. And I wonder where Roslynn gets it from.
My 2018 was basically Alexander’s one crappy day on repeat for 365 days, messy red hair and all. Not to be a huge debbie-downer because I had some good times in 2018, but I am not sorry to see it go. As most typically do on December 31st every year, I woke up reflecting upon my year. Reminiscing on 2018 is something I’d like to skip, but all bad things generate a life lesson of some sort. Through my struggles with Greyson over the past year, I have realized that I will never change the past, nor would I want to. His tantrums, inability to communicate verbally and medical issues have only taught me patience and self-advocacy skills for myself and my child. And although it’s taken me 2 1/2 years to feel it, I am finally feeling a connection with Greyson. I melt a little whenever he says “Mamamamamama” on repeat when he wants something.
In terms of advocacy, I was always so afraid of what others thought of us, even dating back to one of my first few blog posts. I was terrified to take Greyson out in public because of the way others perceived me as a parent. 2018 taught me that I can’t control these situations and that I have to let them go. If people judge or stare at Derek and I while we ignore our child’s tantrum, so be it. If people roll their eyes because we have a backpack harness on G, I am happy to tell them the truth- we are working on him walking independently and without eloping from us. I was that parent that didn’t believe in leashes for their kids, but with all the crazies out there snatching up kids, the harness is a safety necessity out in public. Another plus is that G really does enjoy walking and having us not carry him all over the place. Also, I no longer feel afraid to take him out after a laser treatment, terrified of what others may think about his bruises and what remains of his Port-Wine Stain.
Bruises from his treatment done on 12/28/2018
Aside from our journey with Greyson, 2018 has taught me to never take a day for granted, including seeing friends and family members. My family has had a fair share of losses this year, more in the past 7 months than in my entire (almost) 30 years. My grandpa was my biggest fan. He always toted himself around Lancaster, so he could be at my recitals, opera performances and musicals. When we lost him in May, I was devastated. Singing his funeral mass was one of the hardest things I have ever had to do, but it really would have been a dishonor to not give him one final performance to say goodbye. Seven months later and not a day goes by that I still don’t think about him at some point, especially when I’m in the car and Sinatra’s “My Way” comes on the radio.
Seven days after my grandfather’s passing, we lost Aunt Carolyn, my grandfather’s sister. My aunt lived in New Jersey/Florida and most of our communication was via email or Facebook as I got older. “AC” as many family members called her, was always at our large family functions, bringing her fabulous outfits, hair and Jersey accent to Pennsylvania for baby showers, weddings, graduation parties, etc. She always wanted to take jazz piano lessons with Derek via Skype and her love for music also connected us in a special way.
A friend of mine also passed away towards the end of 2018, from a heroin overdose. This friend sang in our church choir and was working diligently on becoming sober when he and I last spoke. This friend’s loss especially hit me hard because he was so young, talented and had an entire life ahead of him. I wish I could see my friend one last time to tell him how much he really mattered to me and many people among the Lancaster area.
Finally, my Uncle Glenn passed away on December 22nd after a long battle with colon cancer. Uncle Glenn always spent Christmas Eve with us and other holidays/birthday parties as of recently. Each Christmas we would do our small gift exchange, which typically involved me giving him a Christmas card with $10-20 worth of PA lottery scratch offs in it. Until I was about 24 year old, Uncle Glenn would give me a different board game for Christmas. First it started out as Chinese checkers (which I had no idea how to play), puzzles, chess and dominoes to card games and “older/harder” logic games. Some years, I would receive the same exact game consecutively. The joys of having siblings meant that I could switch my repeated game with one of my other sisters, who also may have receive a duplicate. As I got older and Glenn finally realized who I was (there are 5 girls in our immediate family after all) and that I was moved out and married, he started giving upgraded gifts: candles, rock gardens, mini fountains and LED candles for my Christmas decorations. Christmas was his favorite time of year and though he didn’t have to get me and my sisters anything, he always had gifts wrapped, with our names (and our kids as we started having them) on each gift. I will miss him the most at Christmas and will miss seeing him walking around Lancaster as I drive home on 999.
With the losses over the year and the hurdles we have jumped over for a clear diagnosis for Greyson, I learned that I can’t take a single day for granted. I may be having my “Alexander” day and think a tough day is the hardest ever, but people aren’t around forever and our kids will never be this small ever again. Live in the moment and make it the best life possible.
With about an hour-and-a-half left in the most terrible, horrible, no good, very bad year, I continue to contemplate my 2019 resolutions. I typically try to set small goals for myself, but I truly believe that this year, I am going forward into 2019 with no resolutions, no reservations and no expectations. I am going to live each day to its full potential, surrounding my beautiful babies, amazingly supportive husband and close-knit family with gratitude and love.
I will close out my final post of 2018 with a few of my favorite photos from 2018. Happy New Year to all of my friends, family and those that read my blog and support me and my family through our daily challenges.
I know what you’re thinking…..This is overly dramatic. You may be right, but when you have a child with a disability, drama is the normal day-to-day scene.
What was I thinking?….”Oh shit.”
Here I am with a 7 month-old child, who has just started sleeping 6 hours a night and I am about to start this process all over again?!
After all, my husband and I were married a mere 48 hours before I was pregnant with our beautiful daughter, Roslynn. So much to our surprise, we were shocked to learn that she was going to be a “big sister” before her first birthday.
Now, I’m summing 9 months of drama into one post, but my pregnancy with Greyson seemed to be much different than my first. I wasn’t nearly as sick as I had been and I felt like it was much easier this time around. These were all positives. I had the whole “pregnant” thing down….. I mean, I did just do it several months previously.
Despite the easy pregnancy, there were issues. At a routine anatomy scan in March 2016, the ultrasound tech found two cysts on Greyson’s brain. Though we were assured that he did not show any other red flags for a developmental issue, Derek and I still felt it was best to proceed with genetic testing. I don’t know if this was because we needed to reassure ourselves, or if I had a gut feeling from the start that something was off. Fast forward to a few weeks later and Greyson’s genetic testing results were all negative. The remainder of the pregnancy was uneventful until I went into labor naturally, exactly one-week prior to a scheduled repeat C-Section.
Greyson Michael Martin was born on Monday, August 8th 2016, at 5:03 PM. The delivery was eerily peaceful and quiet with only The doctor, anesthesiologist, assistant, NICU doctor, Derek and myself present. This was MUCH different than my emergency delivery of Roslynn, who was born 5 weeks early due to acute preeclampsia. I was that Mom, who forced her husband into taking tons of photos in the delivery room. Luckily Derek likes me and complied with my request.
In the midst of the doctors closing me up, Greyson getting cleaned off and receiving his APGAR testing, it was discovered that Greyson had a tight, true-knot in his umbilical cord. We were told there was nothing to worry about and though true-knots were not very common (the doctor actually had only ever delivered 3 babies with one in a time span of 25 years as a OB doc), Greyson was healthy and scored average on his APGAR tests.