I wrote a guest post for a lovely page on facebook, Cat on a Trampoline. I had to think about what I wanted a new audience to know. Eventually this is what I wrote. Hope you love it! ~
To many people, I’m just Emelie’s mom. I run the page Em’s Journey on Facebook at and manage this blog. I wrote a book for children on the sensory side of Autism from the perspective of Emelie and she illustrated it, and now I’m managing the website for it. I’m mom. I’m wife. I’m the bank teller. I’m the advocate. I’m just in general the quiet next door neighbor who spends my time keeping up with my family.
When asked to write this guest post I thought about what to write. With Em’s diagnosis of ASD, PDD-NOS, Anxiety, SPD and ADHD there were so many directions I could go. Remembering how far we’ve come and the struggles we’ve encountered made me realize what I wanted to address here.
I knew in my heart what we were dealing with before we finally received a diagnosis. I wish I had known how to better advocate and fight for her when we first began the journey. I knew in my gut that her first diagnosis was wrong. I knew in my heart the meds weren’t helping her. I knew she needed more. I didn’t know what but I knew she needed more. Yet I didn’t know how to get anyone to listen to me. In the end Em received her diagnosis late and there are times I struggle wondering if I had pushed harder, would her diagnosis have come sooner?
I still wonder if early interventions would have made her life better sooner with therapies to help her function in environments that stressed her out. Some time ago though I realized that I had to let it all go. I had to allow Em to have her journey. I couldn’t live life looking backwards but rather face it head on looking forwards. After all, at the end of the day, all the questioning in the world won’t change the facts. Her journey has given her experiences that have given her strength and perseverance.
Once her diagnosis came through we found the missing piece and it fit. We put her into therapies and adjusted life to fit her diagnosis got rid of the meds that weren’t working and learned to communicate and function together as a family. As we did, things started to make sense and gave us hope as a family that we were all going to make it through this journey. We communicated better as a family. We slowed down. We planned our life out a little more purpose driven. We all had scars from the years of the unknown but we healed.
The journey didn’t come without casualties though. We had family and friends that were confused and didn’t understand. We had people who distanced themselves or limited contact with us. We had people who stopped talking to us altogether. There are often times we feel still to this day alone and ostracized. Yet, we also found support in unexpected places. That’s the support we get so we cherish it while we have it. We still miss being at barbeques with our friends or invited for whatever. It is what it is though. We can’t make people love us. And as time has gone on, some of our friends have learned more and are around more.
As for Em, she isn’t one that fits into a box. She is social. She can hold appropriate conversations. She wants friends. She doesn’t like large groups and while she fixates on things, they change like the wind sometimes. She can problem solve. None of this happened overnight. Just like all of us, she is a work of art in progress. She doesn’t like to be pushed but she knows that in order to grow, she is going to have to face the things in life that are uncomfortable and step outside of her comfort zone. Sometimes she surprises us when she takes those leaps on her own.
Once we took our time to grieve our expectations for her and realized it wasn’t the end of the world, we grasped on to the hope that everything would somehow work out. She has lived her life more than you can imagine. She does everything with her whole heart. That’s more than most of us can say. She struggles in those moments but with some encouragement and time, she gets back up and presses on. We’ve always stressed to her that she is greater and more than the sum of her diagnosis’s. That the only limits she has are the ones she places in front of herself.
Em will succeed at whatever she sets out to do. She has learned, as we have stressed, while it’s not always easy and things may not always go the way we want or expect them to, it is not the end of the world. She has learned to that it’s ok for her goals and ideas to change. This road sure hasn’t been easy, and I don’t see it getting easier down the road, but the blessings and joy are worth the time. It may not always seem that way. There will be good times and bad. Yet, Em has been worth every bit of it.
As a parent, we had to learn to not dwell on would’ve, could’ve or should’ve. We needed to learn to focus on the here and now and do our best to plan for the future, realizing that things still could change. One of the hardest lessons we had was learning to not feel guilty and to pick our battles. We had to let go of the guilt and anger and embrace and love ourselves and our family above all.
One thing to remember is that they hear us. They may not be able to tell us they love us, hug us or look at us but they do. Even when they are screaming they hate us for whatever reason that happens to be in their perceived reality. I used to have to carry her off the playground upside down protecting my face from her nails, while she screamed and shrieked all the way home. Now some years later and she can tell me that she’s mad at me and may get thoroughly miffed but will work towards some sort of compromise. She knows that we won’t always negotiate things but sometimes it’s ok to negotiate and compromise. We just had to learn where our line in the sand is.
Now we just have to learn how to survive the teen years… this journey is FAR from over.