Last night I was faced with taking an assessment via a private webpage about Taylor. It was to help her Developmental Pediatrician narrow down just exactly where she falls on the spectrum. Remember, we were told when she turned two that she had Autism Spectrum Disorder or ASD. At that time she was considered high functioning.
Something has happened friends and family and what I am about to share with you all frightens me more than you will ever know.... Taylor has fallen ever further behind and sunk even further into her own little world. Nick and I have noticed this for some time, but what really convinced us was her recent behaviors - that are not at all Taylor. This assessment is out of 180 so 0 being normal and 180 being severely autistic... Taylor scored a 116. All my dreams and hopes and goals for Taylor, went out the window last night, as I realized I would have to make new dreams, goals and change what I hope. This makes 2 times now where my dreams for Taylor have been crushed. Once the day she was born and the other last night.
I am not saying this in a negative, whoa is me kind of way - I am slowly with the help of Nick and Taylor's support coordinator coming to terms with the idea of creating new dreams. That it is okay to start small and move forward. So for now, my dream if you would like to know, is that she continues to respond in therapy and that she continues to communicate with Nick and myself.
The next couple of months are going to be challenging, we are changing Taylor's diet based off a lot of research I have completed, we are going to get her into the Autism school full time, even if we have to collect on our retirement fund. She will get the help that she needs, despite what our finances say. I am not one to bring money into situations, but this one is going to cost us a lot. The gas to and from therapies, the money to buy organic, gluten free, Casein free food ( which is not cheap.) and then the other factors of our daily lives, medicine, dr. visit's specialists - these all require trips that are 2 to 4 hours to get to, which use gas...
I am looking at potentially going back to work to help out some - As long as we can get her into somewhere full time, I can work.
So for now, friends and family I ask for patience and if I ask for help in any form I ask that you please help my family. I am one for taking on the world and trying to play superwoman.. but in reality sometimes I need to be told that its okay. You can not help everyone all at once.
So I ask you all to be patient with me - Do not be angry when I tell you I can not do something and then tell me that the world is going to end because you do not have my help... I guarantee you that I would trade lives for a day if it meant getting out of this nightmare.
Thank you for taking the time to read this and for understanding.
Nick and Janine.
