Perfectly Paisley It's a love story pt2
My husband, our oldest daughter Ambrose, and myself jumped all in this journey to discover how to be the best family for Paisley. We all went to play "trainings" on how to play with Paisley, to make eye contact, and to understand the ups and downs of Autism. Paisley began her speech, and occupational therapy's.
We had been working together as a team, but as a mother going to her doctor appointments and filling out those forms that tell how your child is developing was painful. I could feel that there was this fear deep in my heart that occasionally spilled out. At every doctor appointment she was falling on average 2 months behind each time and the in your face proof that she wasn't progressing.
We had worked and worked and worked on her interacting with children of her age, to engage in simple play. We'd get so excited if she even stood next to a child, or picked up the toy they had first played with, to even playing with a toy in it's intended form. Our daughter was rounding 2 and she was becoming more and more introverted and my heart was quaking.
After 6 to 8 months of continued therapy hard work and concentrated methods of development strategies, I took Paisley to a neighborhood park where children her age were playing. I watched as she walked out onto the play ground and just stood there. I look as the other children were climbing little steps going down little slides and communicating with there parent/s, pointing and interacting, then I looked at my daughter, she went under the play ground equipment and started to bang her wrist on the cold steel. I walked over to her and called her name and she didn't even look up. I picked her up and put her on the slide, where as soon as she reached the bottom she went right back to the steel pool and commenced banging her wrist. My heart broke. Months of heard work, interactive play therapy OT, Speech, Doctors appointments and so on had not changed anything right then. I sat on a bench and overwhelmed with defeat I cried. I said for the first time out loud that this isn't working and that I had no idea how to fix this.
In between my heart sobs I heard His voice, What so wrong with her the way she is? I paused and my tears stopped falling. Well nothing my heart spoke back. Then his voice again said... I have made her perfect, flawless. When will you see her for how I made her instead of who, what or how she is socially excepted. She is not meant for the charts but for celebration.
It was as if there was a burden lifted. I didn't need to fix what was not broken but instead to celebrate every good thing, every positive experience, and every tiny goal achieved.
We started doing everything at Paisley's pace. I have not looked at a chart since we decided that the only people that needed to change was us. Our compassion grew, our patients seemed to have no end, and as a family we really fell in love with our new perspective of Paisley.
It took us months to figure out that between trial and error our daughter was suffering from terrible motion sickness and because she couldn't communicate anything to us regarding that feeling she would be overwhelmed. We learned that every little thing had to be done in certain number sequences and every task had to be broken down into do able step. We had to show paisley by pictures, and talking what was going to happen so that she wasn't fearful. We worked for hours on going in and out of the car, what side to enter, and in what order would we put on her seat belt. It had to be done the same why all the time. We were learning to live life in a routine.
OUR GREAT MOVE
We moved to Arizona when Paisley was 2.5. she wasn't talking still although she was using a communication binder and a few unrecognizable signs. Paisley started to exhibit different behaviors then what we were used to. Her jumping and flapping became a almost all the time behavior along with self stimulation. Though our patients were growing so were the signs that our daughter had autism. I took her to a Phycologist at children where I had received a soft diagnosis. But, because she was under the age of three she would not receive any services. So I prepared. I had what seemed like hundreds of pieces of paper that made up her medical records. I began to place them all in a binder by the year, and placing the most important and most asked for often document near the front for easy access. This binder system would become my life savor.
I discovered that we were fast approaching having awkward conversations with people regarding our daughters behavior. Our daughter was self stimulating more and more and it was not something we were able to stop, we tried all our newly established tricks and it just was not taking. One day we were approached by a church pastor. He asked about our home life, if Paisley had experience trauma or if we subjected our daughter to adult movies. He went on to explain that church staff was really uncomfortable not reporting us to CPS for child abuse and wanted to know why paisley played with her self. It wasn't that we had not explained our child or her behaviors but they just did not understand. We were unable to alleviate their fears and so we were asked to pull our daughter out of children's church. My husband and I started a knew and much more challenging phase of parenting.
As paisley grew so did her behaviors and her what we call now melt downs and they seemed daily. I wanted to pull my hair out. Amber would just cry sometimes because we would be at a loss. For somethings that had worked stopped working and we felt the heavy pressure of finding new solid ground.
Documents to hold onto and never ever loose:
All diagnosis
Make sure that doctors are specific in what they write, not leaving any room for error.
Immunization
Birth Certificates
IEP's
All Evaluations
All doctor appointments and results
Part 3 of Perfectly Paisley Love story coming!
