A Four Year-Old Birthmark

Evaluation Day La Vie de Autism

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.
  1. Evaluation Day
  2. A Four Year-Old Birthmark
  3. The Journey Begins
  4. And We’re Live
La Vie de Autism Live Podcast- 8.7.2020

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.

Helmet

Minor Headbanging injury

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.

A Pre-Helmet meltdown and this was the result

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.

Once we got the helmet, he started to punch and scratch himself in the face

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.

Post hospital happy face and happy because our furniture still had not arrived
After work snuggles with the babies

I Get High With a Little Help From My……Parents?

A fair warning before anyone reads this post:

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.

Playing House

When I was younger, I loved playing house. I would go outside and play in our log cabin playhouse (it was huge and made out of real wood by our neighbor) for hours. The playhouse was the place to be on our block, the entire backyard made into a kid’s playground dream. We were extremely fortunate that our parents were able to make us an awesome place to play, which we did during all seasons and types of weather. I always pretended that I had twin babies (I had the Baby Tumble Surprise Twins- super popular Christmas gift in 1997) and that I had the coolest house and cars, etc. I imagined I had the perfect life, perfect babies and perfect house.

Flash forward 23 years and I’m still playing house, except it’s real and it’s a lot harder than I ever anticipated. Also, instead of legit twin baby dolls, I have “Irish twins”, one of which is the equivalent of 2 1/2 kids. Now I don’t think think I could ever have that boring, plain life. I got my first taste of being a normal mom last night. Since Derek and Greyson were in Philadelphia at CHOP, Roslynn and I decided to go out to dinner with my good friend, Julia and her boyfriend. It was so odd leaving work and picking up one child to go to a restaurant to actually sit and eat. I felt like a normal person again. Afterwards, once we got home, the house was too quiet. Ironically, I got 5 hours of sleep (most I have in months) and I was more tired today than normal! Essentially what I have learned in the past 24 hours, is that I need to be a normal person sometimes and make time for normal things. I also really need the excitement of Greyson in my day. It was so lonely without his belly laugh and the sound of him staircase surfing at all random hours of the night.

Waiting for Julia to arrive for dinner

The next bit of information is per Derek, so I am simply relaying this.

Greyson and Derek checked into CHOP around 5:30pm. It took a good bit of time to get all the electrodes on his head, cap put on and wires stuffed into the backpack he carried around. The electrode placement is always extremely difficult for G, especially since the glue to hold the electrodes on, is super stinky and gross. After having the opportunity to eat dinner and relax, Greyson fell asleep. Unfortunately, he did not stay asleep through the night. After tossing and turning and a tough morning, he was finally discharged from CHOP around 1:00pm. Luckily, the staff was able to get the data they needed and even got the glue out of his hair before he was discharged.

After 5 different seizure medications and two years of finding a medicine regiment to control the epilepsy, we have finally received good news.

Greyson had zero instances of focal seizures while he slept and while awake. This essentially means that the Onfi is working! He has had minimal side effects with it and I’m really feeling good that we finally have found the right mix of meds. 835 days after his first diagnosis, we finally have a solution.

Finally

I’m waiting for a final report from the neurologist, but this is the best news we have heard in over two years. We needed this good news. We have been really struggling over the past couple of months, but all of those feelings are currently on mute. We are so excited. We still have a long ways to go, but this was the perfect push we needed to keep our chins up. Excuse me if I am giddy tomorrow, but TGIF and we have a successful medicine managing seizures that were once deemed uncontrollable.

Happy face for my happy baby boy

The World of Autism

2020 has been off to an interesting start. Interesting is the best word possible to describe the mixed emotions we have had since entering the new year.

Whenever I see people I know out in public (work, stores, church and other places I actually go), everyone always asks how Greyson is doing. I almost always respond “we are hanging in” or “he’s an interesting kiddo”. The truth resonating in my mind is always, “why do I try to play this off like it’s no big deal and that I am managing this fine”, when deep down it physically breaks my heart if I put too much thought into our situation. I thought that as G got older and we learned his routine, tics, compulsions and behaviors, things would get easier. Truth is, as we learn more about him and his condition and the bigger/stronger he gets, the worse things seem to be evolving.

I have found myself telling parents recently that “the world of Autism is an entirely different world. No books, research or degree is going to prepare you for it.” And it’s so true. The world of raising a child with ASD is an entirely different ball game. Even working as a TSS in the past with kiddos with similar disabilities as G, I never would have imagined that raising him would be the hardest job of my life. Working full-time and being a full-time mother of a child with special needs and a very busy sibling, is becoming quite the challenge.

I must say that my work has been keeping me grounded in actual reality. Talking to other parents, listening to their stories and putting their child’s faces with their name, has really given me solace that I am not alone in the world of Autism. WE are not alone in this world. We, as many other families, take our world day by day. Never assuming that one day will be the same as the next, because it never will be.

Medically, G has been grand-mal seizure free for a several weeks now, adjusting well to Onfi, which is is most recent anti-convulsant prescription. Things were going fairly well until January. Not sure what (if anything) had changed, but his impulsiveness became unmanageable. Everywhere we went, everything we did, always ended up in something broken, destroyed or someone injured. We were fed up. We met up with his child psychiatrist and started a dose of clonidine. Immediately we saw a difference in Greyson. We traded impulsiveness and hyperactivity for extremely fatigued and aggressive Greyson. On a positive note, despite the tiredness and negative behaviors, G has been doing extremely well on the clonidine. He is happy again, sweet and loving. He does not get really aggressive unless we deny him access to an item he wants, or if he is extremely tired.

Extremely sorry to my mother in law for this one

Post tornado Greyson after a morning tantrum

Though there are many negative things that can be said about his destruction, aggression, lack of sleep and self-injury, he has been doing very well with school. He absolutely loves school and enjoys going to his class, even though they make him work. School has reported that he’s extremely fatigued and falls asleep during instructional time, most days. His ABA service comes out after lunch/naptime and he seems to be doing well with this as well, even enjoying his “roller coaster” toy for reinforcement.

Tomorrow, Greyson and Derek will be traveling to CHOP in a Philadelphia for another 24 hour EEG. This is overnight EEG #3 and his 5th EEG he’s had to date. We are hoping this new EEG will show if Greyson’s seizures are better managed during sleep, with the medication regiment he’s currently on. We are also hoping to see some more brain activity from the left side of his brain, which is his “lazy side”.

I used to have high hopes the night before a procedure, appointment or test, praying we would get answers or a cure. Now I have become so desensitized to how these appointments typically go, it just feels like another test and another appointment. If the Onfi is managing his seizures well, we could potentially discuss decreasing the medications all together, but depending on which neurologist you ask, we may or may not have much luck. Greyson’s specific type of focal epilepsy is very rare, specifically the seizures when he is asleep.

Electrical status epilepticus in slow wave sleep (ESES) is a rare, age-related, self-limited disorder characterized as epilepsy with different seizure types, neuropsychological impairment in the form of global or selective regression of cognitive functions, motor impairment, and typical electroencephalographic (EEG) findings of continuous epileptic activity occupying 85% of nonrapid eye movement sleep. 

The neurologist and psychiatrist also have a theory that Greyson is so aggressive and injuring himself over the past couple weeks, because he’s tired and not sleeping well. He gets migraines when he’s extremely tired, so I can only imagine how he must be feeling. He obviously isn’t aware that this EEG is taking place tomorrow, but please keep fingers crossed that we will see some improvement in his night time seizures.

Only way he will sleep- cuddling with sissy

Reflections of a Year: 2019

Sums up 2019 perfectly

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!

Snuggle Buddies
His number one friend
2019 School Photo
Showing off her coloring skills. Waiting for her surgery (tubes/adenoid removal)
Tap Class
He loves the lights
4:30 am Christmas Morning faces
Feline watch dog
Could have been our Christmas Card photo but I didn’t send any LOL
Little Diva in the making
Besties
Christmas Eve Goobers
Cheesy Smiles for Momma
Derek and Rozzie at her class Thanksgiving party
Funny faces and dress up
Zonked with Duke
Chocolate face
The fur babies

King Size

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.

Yoda 2017

2018 Wookie

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.

https://www.google.com/amp/s/www.newsweek.com/blue-bucket-halloween-autism-trick-treat-1465718%3famp=1

Happy (early) Halloween, y’all and please send me costume ideas for G!