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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!

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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