If you follow me on Facebook, then you already know that over the Fourth of July weekend my family was surprised with a trip to Disney World. You also know of the major success we had with an unplanned trip. In the world of Autism unplanned trips and sensory overloads are not something that typically go smoothly. But there was a part I never put on Facebook. So here it is …
Disney – The happiest place on Earth, the place where dreams come true, the happily ever after – In my mind all great marketing techniques to bring large groups of people together in one expensive place. This time however I found my “where dreams come true” in this trip.
Flashback to three and a half years ago:
Buggie was known as destruction. Everything he touched, he broke. He was rough and needed to feel and pick at everything. I can’t tell you the number of items we have lost to his “Destruction.” My mom and sister were frustrated with his level of destruction, much as we were in our own home. Before the age of 3 Buggie had successfully destroyed 4 computers and countless items in the house. He was not talking, he was not responding, he was in his own world most of the time. We went through so many hearing tests and to the ENT to deal with residual fluid in his ears, and still things did not get better. My family has always loved my son, and still do but he was never the easy to deal with child my oldest was. In September of 2012 we meet with a developmental pediatrician and were after many visits and multiple questions and observations we were given the diagnosis of PDD-NOS, or Atypical Autism. I was devastated. I had to accept what me and my dad had suspected from the age of 8 months old. My mom went in search of answers and cures. She spent hours on the internet searching for reasons this would have happened to my son. You see my mom has this thought process that she has to fix everything! At that point I didn’t want to fix my son, as I didn’t see him as broken I wanted to help him any way I could. The one thing that stood out in my mind from all that time ago was a statement she made “Maybe he will outgrow this.” I was angry. I wanted to scream and yell at her. I wanted to lash out and tell her how she didn’t know anything and that he would always have autism, that this wasn’t going away.
Fast forward to current time:
Through all of this she has listened to me vent and cry and ask why me. She has always spent a lot of time with my oldest daughter and will take overnight, but not my son. She told me it’s not that she doesn’t love him, it’s just that his needs are different. This too pissed me off. I did not give her credit for her honesty and realize what she was trying to say was “I love him honey, but I don’t know how to deal with his needs.” For christmas this year my mom bought me an Autism Acceptance necklace that has a heart and the autism ribbon. On the back of the heart she had it engraved with “I wear this ribbon for my hero, Buggie.” I cried at this gift because it showed me she was finally accepting his Autism as part of who he was and that it wasn’t going away.
So how does all of this fit into our weekend of dreams come true? Well she spent the entire weekend with all of my kids. She walked hand in hand with my Son through Disney. She was always checking to make sure his sensory needs were taken care of. And my son in turn was in seventh heaven with my mom by his side.
This weekend taught me a lot. Mainly it made me realize that acceptance looks different for each person. It’s not that my mom doesn’t love my son, it’s that she isn’t sure how to meet all of his needs on her own. And that is okay! Even I can admit that as his mom, I’m not always sure how to meet his needs on my own.
In the end all that matters is that we have tried and done our best. Our kids, regardless of ability, need to know that they are loved and taken care of.