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!

Travel Plans

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
  • Pack
  • Maybe sleep?
  • 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:

  1. Catch a seizure on video
  2. Increase G’s meds over the next two weeks
  3. 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.

Wrong.

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.

Zonked from the seizure

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 !

The view from our living room

Some other photos from the trip:

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“2018: The Terrible, Horrible, No Good, Very Bad Year”

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.

Daddy and G

Rozzie at Christmas brunch with Santa

Greyson eating with a fork!

Artsy B&W of our boy and his birthmark

Roslynn stealing the show at her 3rd bday party

Buzz PJs

Greyson’s first big boy haircut!

Ready for some snow

Our first attempt at an MRI @ Dupont Hospital

The Journey Begins

December 21, 2015

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?!

“Oh Shit.”

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.

Uncommon, but not concerning? Red flag.