Hi and welcome to Lost in the Script. I want to introduce myself and the mission of this blog. My name is Megan Holler. I'm 43. I live in Phoenixville Pa. with my husband, Brook and our three sons, Logan 14, Cole 12, and Cash 5. I have been a hairstylist for the past 22 years and most recently started working for myself. Now that you know a little bit about us, let's dive right in.
About two and half years ago we noticed our three-year-old at the time was not speaking. We decided to have an evaluation. We assumed it was a speech delay because our middle son, Cole had experienced that. I'll never forget the day we got the news.
My husband said "Would you like me to go to the meeting with you?" I said, "No, it's all good". I was assuming they were going to say he has a speech delay, and this is typically when speech class starts. It's funny looking back, when I went to the evaluation meeting it felt different. The woman was serious and got straight to the point. "Cash has ASD," she said. And, because I had no idea what that was, she said, "He has Autism. He is Autistic".
Ok, now I was getting it. Tears started streaming down my face. I asked if I could have a minute. She was very kind. I couldn't even focus on a thing that was said after "autistic". I just knew from that moment on things would never be the same, not in a bad way, just in a different way. After the meeting I went to pick up Cash from his pre-school. I had to share the news with his teachers. When I pulled them aside to tell them, they were so kind. They said, "We're just thankful Cash can get the help that he needs now". And when I saw the little guy, I just gave him the biggest hug and told him I loved him so much. I felt scared and worried. However, at the same time, my heart felt so full and proud to be Cash's Mom.
After sharing the diagnosis with Brook and the and boys, there was a heaviness in the house-some anger, some mourning, and sadness. Now, in these moments, we could have let fear set in. But we are a Christian family with strong faith. In the storm, there was a calmness. We knew God had us, and Cash. That night before I fell asleep, I simply said in my prayers, "please help us." And that's exactly what happened.
When I woke the next morning my favorite worship song was playing in my head. It's called "Goodness of God". The lyric was cause your goodness is running after me. That was comforting. I poured my coffee and sat down to do my daily devotions. I typed in devotions for parents of special needs children. This is where God led me to John 9:
As he went along, he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?" "Neither the man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him.
I can't explain the peace I felt when I read this. However, there was still so much to sort out, school, therapy, telling the rest of our family.
We are 2 1/2 years into the diagnosis. One day at a time we learn more and we love more. I wanted to start a blog because the best way I can navigate my feelings is through prayer and writing. Over the past couple years, I have used my husband as a sounding board. He is the only one who gets it. We live it together. But I have so many thoughts and feelings, I thought it might benefit someone else who is living it or trying to understand it. I will also use this platform to educate people on the right verbage to use while talking to a parent with a special needs child. I will say 95% of people and situations regarding Cash has been positive and supportive, however, some reactions and comments said have been hurtful. As I continue to blog and share our experiences, I will get into the specifics.
Before I end the introduction, I'd like to explain the title of the blog. Cash is verbal, however, a decent amount of his communication is done through scripting. Scripting is repetitive behavior that is common in verbal children with autism. I'm learning that he does this because it directly ties to feelings and reactions to environmental and sensory stimuli. With that being said, as my husband and I were discussing blog titles, he had a couple written down. This certain one stuck out because at times we feel as though we are "Lost in The Script".
Tap on each picture below to read about our journey.
Wow it has been so long since my last post. I believe it was back in July when we were celebrating our one anniversary for Lost in the script. I apologize I just don't put pressure on myself, honestly, I blog when I'm inspired. With that being said here are some cool things that have been going on.
Wow can't believe it's been a whole year since we started our blog. I'm so thankful we have a space to share our family's journey through autism and just regular parenting trials and tribulations. If you have taken the time to read any of our blogs or have shared them, or dropped a comment we would love to say, "Thank you". We appreciate all of the support and love we have received over the past year. Over the next year there might be other subject matters. As I mentioned we have two other sons who are teenagers. That makes for good material as well. Besides celebrating our blogs first anniversary we are also celebrating our Cashy boy who is turning seven today. This past year we have watched Cash thrive. He stepped out of his comfort zone in so many ways. I look forward to sharing what the next year holds for him.
This blog has been on my heart for the better part of nine months. I never knew where or how to start. I have constantly been putting it into prayer like "Lord, place the words on my heart that you want people to hear". So here I am after months in prayer and hoping what is in my heart can be transcribed into good and helpful information. Disclaimer, I am no doctor, this is all observation and a mother's point of view.
We have recently found an activity that Cash absolutely loves. It's called little ninjas. It's at a little gymnastics' gym here in Phoenixville. It's called Ariels. Let's back up a little and I'll tell you how we got there. Back when Cash was around two and 1/2 or three my best friend Kate was taking her younger girls to a little drop-in gymnastics class. She asked if we would like to join, so we met them there. I was familiar with the place because when my oldest, Logan was eighteen months we did a mommy and me program. So we go to the class, which is pretty structured and your confined to this particular room because it is for the littles. The kids are waiting in line and taking turns at each station. However, that's not what was happening for Cash and me.
Your always hearing people talk about "acts of kindness" or "being kind. For some this could be hard because they're not built that way and it feels like work. However, for some it's just who they are at their core. I recently ran into a woman I knew just in passing. We have since became friends. She asked, "What are your son's name"? I said Logan, Cole, and Cash. As I was saying Cash's name tears ran down her face. She explained to me that she has been struggling personally. However, with a new job she recently acquired she gets to meet with Cash once a day. She told me "You have no idea what your son has done for me, he brings me joy ever day". I'd be lying if I said this was the first time someone has told me this. But it never gets old. To know someone who was struggling through a very difficult season found joy if just for a minute through my son, is such a gift. We all have gifts and bring something special to the table. I would say Cash's gift is putting a smile on at least one person's face everywhere we go.
Tis the season of getting sick. In the month of September our family took turns getting sick. Cole started us off. One lovely Saturday morning I was awoken to the sound of vomiting. Which if you're a parent this is a normal occurrence in your household. After Cole, one by one we all dropped like flys. Whatever that sickness was can go back to the depths of hell in which it came. Unfortunately, Cash got it the worst. He was sick off and on for the next three weeks. He missed a total of ten days of school. He had a temperature every other day. We took him to the doctors twice. Was met by one doctor with an attitude as if we were interrupting his coffee break. And the second doctor almost a week later just saying it was all viral and it will pass soon. Cash has not been sick since he was three. Which means this was new territory for us. In the sense of the communication breakdown that can happen. I can remember in the first month of his diagnosis, he got sick. Just a quick 24-hour fever. That was easy to figure out. And he bounced back really quick. This was long and scary.
Over the summer my husband and Cash started kicking the soccer ball around. Cash showed some interest and asked if he could play soccer. We got excited because it was the first time, he had asked to sign up for anything. I reached out via email to our local soccer club. I wanted to see if they had special teams for kids like Cash. I was able to connect with a board member there and he informed me they didn't have that; however, he made a great suggestion in what age group and experience level would best suite Cash. It's so amazing how God is always working things out behind the scenes. A couple weeks after sign ups, I got an email about the team Cash was being assigned to. It was a family that we know, and my son Cole has been best buds with their son for the past five years. I felt so relieved to not only know who would be coaching Cash, but who also knows our family and Cash's needs.
Cash started first grade a couple weeks ago. We are off to a strong start. It was this time three years ago that my husband and I were becoming concerned of how little Cash was speaking. However, he did start an a-typical pre-school. I remember dropping him off that day with a little concern. "Will he be ok"? " " If he's not, how will he tell someone"? It's around this time we reached out to the Chester County Intermediate Unit. These are the people who will come out and observe and test your child to see what is going on with them. They were just about to come out to do the testing when his pre-school suddenly closed. We had to scramble. We were able to find a well-known school that I actually attended at Cash's age. He felt comfortable and happy there. Over the next month or so Cash was evaluated.
This particular blog is something that has been on my heart for a while. What I found is that when people don't know what to say they end up saying something silly or hurtful. Listen were all guilty of it. Often times people don't mean it or their just caught off guard of what was said. I would love to elaborate to help educate people on what you could say to a parent of a special needs child versus some things that have been said to me. The one that sticks out and was most hurtful is when someone had realized Cash was autistic and said, "Oh he doesn't look autistic". In my head I was thinking, "You don't look like you want to get punched". LOL, but seriously. I honestly did not respond. I walked away. Upon finding out about Cash she simply didn't have to say a word. Or she could of went with something like this, "Cash seems to be doing well". Thats all, move on. Sometimes when I think about that day, I get angry at myself for just walking away. I could have used that moment to educate her on the correct verbiage to use in situations dealing with special needs parents. However, that's when God started working on my heart to start a blog.
Every year it has become tradition to visit my family who lives near the beach. My husband is not the biggest fan of the beach, so he usually takes this time to stay back and work on house projects, so I am in charge of all three boys. The good news is Logan and Cole being 15 and 12 are pretty self-sufficient, however, older kids still require attention, it just looks a little different. This year, we arrived, quickly settled in and began our adventures.
Since the day we found out about Cash, my thought has been the same. Raising a child on the spectrum is not bad, it's different.
I can remember with my first two sons, when it came to holding a crayon, it was like second nature to them. They picked it up and started to color without a problem. Looking back, I guess I took it for granted. It is just something you're supposed to do. When it came time for Cash to start doing that is around when we found out about his autism. When we got the diagnosis it made sense why he wasn't expressing interest in doing things like starting to scribble or color. He had a hard time grasping a crayon.