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:

oi

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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

The Waiting Game

Sleepy minion boy

I am notorious for being the most impatient person in the world. I have such a difficult time waiting for things that I know are important and need to get done. I have always been impatient, which negatively effected me throughout my school years. For example, I would be handed a test or an assignment in class, and I wouldn’t even read the directions and breeze through it. Not sure if it’s anxiety or if I don’t like the feeling of waiting or anticipation, but I have never been the type of person that could sit back and see what happens.

Looking at where my life is now, I wish I leaned the skill of patience in my childhood. When you have a child with ASD or Developmental issues, life becomes one giant waiting list. From the initial phone call to early intervention, to our current wait for the CARD program at Kennedy-Kreiger, it’s been over a year that we have been waiting for clear answers. I should feel proud that I’ve made it over a year of waiting, but my anxiety of not knowing has been constantly on my mind.

At work this week, I was presented with some questions about my personal leadership strengths, areas of growth and how I perceive my current leadership roles. I used my blog as an example of how I want to lead other parents on this journey, to understanding and what they can do to make their lives easier. I also want to lead others because I want those parents that have neuro-typical children to accept and understand what other families may be going through. At the time, I always feel as though these miscellaneous tasks activities at work are boring and pointless, but then I sit and really think about the questions and reasons why we do them. In a way, that boring and pointless activity inspired this post.

Back in December 2017, we had genetic testing done as part of a research study through the Clinic for Special Children (CSC) in Strasburg, PA. The clinic is strictly devoted to children with Amish or Mennonite backgrounds and because Mennonite roots are in both Derek and my family, Grey was able to be seen there. We have been waiting for results since December. This past week, I finally received a fax from the clinic that had an overview of the results, but none that went into much detail. The results read:

“Thorough genetic results not available due to no severe abnormalities found.”

So for 10 months we have been waiting for some sort of genetic explanation as to why Greyson has epilepsy and that was the result. There was also another added comment to the fax, from the doctor G saw in December at CSC that said:

“Family history is positive for Autism Spectrum Disorder and borderline genius intelligence from biological father.”

Explains Roslynn’s ridiculous intelligence and observation abilities.

So for now, we continue to wait. We wait for more genetic testing through Johns Hopkins, a 24-48 hour EEG, a re-evaluation for his Autism Diagnosis and for an intake at the CARD program in Maryland. I wish I could say that I am used to waiting now, but I would be lying. I have however, gotten used to staying busy to keep my mind off of a wait, including some nice naps on weekends and evenings. Greyson has been enjoying them too.

A Friday “after work nap”

Rush Hour

Never again will I EVER make an appointment in Baltimore after 3 PM. Also, never again will I EVER bring Roslynn along with us.

As if Greyson’s crying for an hour wasn’t hard enough, Roslynn decided to give us a full-blown concert of nursery rhyme songs on the way home. Everything from “Mary had a Little Lamb”, to “Row, Row, Row Your Boat”, was on the set list. A 2 hour car ride of Roslynn singing at the top of her lungs, except for the time she was screaming because she wanted to call her Nana……Did I mention that I woke up with a headache and have had maybe 9 hours of sleep in two days?

Greyson’s appointment began as they all do: vital signs while he screams, cries and fights with us. Once the nurse got the vitals she could, we were escorted into the room to wait for Dr. Comi. The kids had built up energy that they needed to get out from sitting in the car, so naturally they decided to start wrestling on the floor.

I swear they love each other

In the midst of the WWE match happening on the exam room floor, Dr. Coming made her entrance. We finally got a definite answer- Greyson has NO brain activity consistent with Sturge-Weber Syndrome. This is great news! However, this does mean that he can no longer be seen at the Sturge-Weber clinic in Baltimore. We do know that his diagnosis of ASD still stands, so we were referred to the Center for Autism and Related Disorders (CARD), through Kennedy-Krieger. Unfortunately, this program is in Columbia, MD which is a two-hour drive from our house. We will weigh our options and determine how we will proceed, but in the meantime, we will see Dr. Comi again in January 2019.

Greyson will also be admitted into York Hospital on October 22-24 for a 24-48 hour EEG study. Our new local neurologist, who will be following Greyson’s care in the future, ordered the EEG in hopes that he could catch a seizure episode on EEG. The only downside to this is that Greyson will be hooked up to the EEG electrodes for a day or two, in a small hospital room that is not specifically for pediatric care. I’m having a panic attack just thinking about it. I’m hoping that this EEG will give us more answers and direct us where we need to focus our attention with the epilepsy diagnosis. As if this all wasn’t enough, we will also have our one-year reevaluation for G’s Early Intervention services within the next month, and his reevaluation at CADD to check in on his development.

Please keep Greyson in thought over the next few weeks. Derek and I feel like this is all overwhelming and exhausting, so I can’t imagine how Greyson feels with 2-3 different appointments per week, on top of his daily therapies. Pray for our strength and sanity also, because we typically run on very little sleep, both work full-time and have to manage 8-10 appointments per week for G. Somehow through it all we keep smiling and pushing through, despite wanting to give up and live a normal life.

I try to remember that God sends special children to special parents, and there isn’t anything that we can’t handle.

Even G keeps smiling through this process