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!

639/1095

Hard to believe that exactly three years ago, my amazingly special little boy was born. 5:03 pm, Greyson graced us with his tiny body and big personality. My birth experience with Greyson was actually peaceful and calm. I had gone into labor naturally exactly 1 week before my scheduled cesarean section and because I didn’t go into labor with Roslynn before my emergency section, I had no idea what to expect.

My section with Roslynn was an emergency due to atypical preeclampsia, so I was really out of it and had zero recollection of signing documents to allow interns into the OR. When it came time to go into the OR this time around, I denied all unnecessary staff/students access to my procedure. It was amazing to have less than 5 people in the room, especially since there were at least 10 in there when I had Roslynn. It was quiet. That’s really the one thing I noticed the most that day- the complete silence in the room. Yes, Derek and I spoke to each other and my doctor spoke with her assistant, but Greyson’s birth was calm, quiet and peaceful. Totally opposite of the 1,095 days to follow.

As you can see, he loved being wrapped up tightly, even snoring away at 3 hours old.

Having our first child 15 months prior to Greyson’s arrival, Derek and I were pros in the newborn baby department. But something with different about G. Countless times I’ve heard the same advice for parents of two (and more) kids- “the older sibling talks for the younger one, so his speech will probably be delayed.” Or, “you can’t compare your kids to each other, they’re all different!”. Or my favorite: “he’s a boy. This is what boys do.” Ok. I get it. But after hearing Roslynn’s cry for 15 months before G was born, I knew something wasn’t right whenever he let out a shrieking scream.

Greysons’s regular “crying” was equivocal to Roslynn’s “I am seriously injured or sick” cry. At all hours of the night (and day) Greyson cried often, and rarely wanted to be held and consoled. We discovered he was an independent (or so he wanted to be) baby, who was ready to conquer the world by 8 months of age. Now, not many people realize this, but in utero, cysts were found in the choroid plexus in his brain. The cysts are one of several flags for trisomy 18, commonly known as Edward’s Syndrome. Luckily, G did not have the other red flags for the condition, nor did he have a positive result when genetic testing was done. Why does this all matter?

If you’ve been following my blog recently, you’ve probably read about Greyson’s recent onset of Grand Mal seizures and several trips to the ER. After 639 days searching for answers, I am becoming more accepting of the fact that we may never truly understand Greyson’s brain, or even have an accurate diagnosis. My birthday wish for Greyson, is that he continues to be a happy, healthy and funny little guy, with a big personality and even bigger head of curls.

Greyson has several upcoming appointments and imaging tests coming up in the next few weeks. He also has his intake at CHOP in Philadelphia, with a doctor that understands his genetic mutation (STAMBP Gene) better than our CHOP neurologist is comfortable discussing with us. But, for the next four days, my goal is to give Greyson the happiest 3rd birthday party he could imagine and allow him to be a typical 3 year old boy. These times are trying, but Derek and I are doing our best with providing the best life possible for Greyson and Roslynn. We can only do this together, leaning on each other, talking to each other about our weaknesses and our accomplishments and by being honest to each other and ourselves when it comes to this entire (long) process. We welcome the challenge whole-heartedly.

Greyson's birthdayOne hour old

The first 24 hours

1st Birthday

Greyson’s second birthday

Stay turned for images from Greysons’s third birthday party!

The Fine Line

My little monster

When a family or person calls into CADD to request an evaluation or services, I am the first person the requestor will speak to. Most calls generally last about 7-10 minutes each because it takes awhile to obtain the information needed from the family and to explain our evaluation process and services.

There’s always a line that I will not cross when taking phone calls from prospective clients: no clinical information or recommendations are given to family and I do not get personal with parents. This is especially difficult for me personally, because I want to reassure parents that they are taking the right steps towards treatment. I try to put myself in parent’s shoes- many of them have no idea what they’re doing, just calling us because their “child’s pediatrician told (them) to.”

Yesterday, I received a phone call that really pressed that fine line of professionalism for me. A single mother called in to see where her child is on the waitlist. She was obviously very overwhelmed and emotional. She and I spoke back in May and that’s when she received the new patient packet to complete for her child. You can imagine her relief when I told her that her child was ready to be scheduled and that I just needed her child’s completed intake paperwork.

What I assumed would be a quick phone call, turned into a twenty minute conversation about her difficulties as a single mom. I chalked this up as a lonely mother who needed to talk to someone other than her non-verbal autistic child. Then I realized that I often feel that way too.

Once I hung up the phone with her, I had a fear that maybe I was too lax with her. Much to my surprise, the same mother called me again today. Our phone conversation lasted about another 25 minutes. This time, the mother was crying and confessing her fears for her child’s future. I assured her that she was coming to the right place if she was looking for professionals to be “real” with her and to give her guidance into her child’s care. She thanked me several times for listening to her and helping her navigate our services and complete the new patient paperwork, and jokingly asked if she and I could get coffee together. I chuckled but thought in the back of my mind, that’s what I need- another mother that feels similar feelings I do, or thinks about her child the way I do about Greyson.

Alas, now I wonder: do I continue to not tread along that fine line I have set for myself? Is it better for me to get personal with these parents without giving clinical advice because I understand how they feel? I personally would rather speak with someone that can relate to my feelings and fears, than someone who says “I know how you feel” without actually knowing. I absolutely love speaking with parents that call in to CADD, but the farther we go on our personal journey with Greyson, I can’t help but feel like I want to cry when a parent cries, be angry when a parent is angry, or celebrate their child’s smallest successes with them. All because I live the same life they do. I truly get it because I am attempting to survive the exact same way they are.

When I have an emotional mom on the phone describing her difficulties with her child, I often refer her to the PA Autism Resource Center (ASERT) to find a support group for other parents of autistic children. As I heard the words come out of my mouth today to this particular mother, I felt as though I was living a double standard. I have so many people telling me that I should join a support group, but I always brush it off. Why am I giving resources and ideas to other parents if I can’t even take my own advice?

My professional goal over the past two years has been to lead and live as a more professional individual. But now I wonder: should my goal be to maintain professionalism while I use my own personal story to lead me? Do I tread the fine line more often and truly connect with these parents that call in? Will that benefit me in my position, or hurt me? Guess these are just questions I will continue to seek the answers to….

Some of the wonderful staff at CADD @ our Ugly Sweater Christmas party