Karen’s story is similar to many of our stories…just knowing *something* wasn’t “right”. Knowing we had to listen to our gut, even when others are trying to tear us down and make us believe we are crazy. Persistence is key when you are a parent of a child with special needs. Thanks for sharing your story Karen!
We have two children, our oldest Faith is 8, and we have been on a journey since Faith was born. I guess I knew right away something was different but kept telling myself that everyone is different or it was a faze. Somewhere in my heart, being a mother, I knew – something was just not right.
Subtle at first, it quickly changed into something else. When she was two years old, Faith developed night terrors which we could not comfort. When we mentioned it to our doctor he said she was speaking so it was probably nothing. Some people around us started to judge us and her – bad parenting and call them temper tantrums. We tried everything to keep her happy and her eating habits became very picky. Again, we thought it must just be a faze as the doctor says. I decided to quit working and stay home hoping the one on one help and attention might be what she needed.
I have to admit I was scared for Faith starting school – I could see how she was not prepared for it but I was hoping she would prove that little voice inside of me wrong. She started school and the night terrors started in waves again. Potty training reverted backwards instead of forwards and there were many accidents – most of which in public causing more whispers and sometimes just rude comments from others. I felt like I had failed as a mother – that I had done something wrong along the way.
There were many meetings with the teachers, counselor and resource people at her school. It took most of my time and found that it never really stopped after that – just some times of quiet but again they would always start again where we dealt with another “Faith Issue.” I still wait by the phone and sometimes it feels never ending.
I explained to the doctor about her issues again and again, and would not give up, so he finally he decided to check if she had any developmental issues. Her developmental assessment finally came back as, “Severe Mixed Receptive-Expressive Language Disability”. This was explained as a problem with anything verbal, receiving it or giving it. It was border line Autistic and this was not a full diagnosis though – it’s partial. I couldn’t believe what I was hearing.
I went into a brief state of shock while we were talking until I started to cry. It wasn’t a normal cry however, it was a frustration and dread I had never felt before. How could they be sitting here telling me that my baby, my Faith, wouldn’t have a full life? Not a “normal” life anyway. I proclaimed that, “My child will be the best she can be. I don’t care if I have to sit every moment helping her get through life but I will not give up. I vowed to do what I can to make it easier for her and no doctor would tell me my child would not be normal.” There was no help for this really, no support – I knew in my heart there was more and that the fight was not over.
After fighting for many years, Faith has finally been diagnosed with “Higher Functioning Autism – with a Learning Disability in Math and Language”. I cried when the psychologist finally said it – not out of shock – but because I have waited so long to finally have a name given to the “problem” that has plagued us for so long. I could now finally get my daughter some help. Years of waiting all boiled down to a one hour session.
I know now I’m not crazy. I felt a sense of validation. Someone heard me and my instincts were right. They heard me and saw we needed help. That’s a huge hurdle for us. One hurdle out of many. Sometimes I wonder if we are already too late but even after all of that I try to remember: Today is always a brand new day, try to smile, keep breathing and people can only give me their observations – I am the one that can choose how to acknowledge those observations and give them meaning. Love drives us and that will never stop!
Karen Sherman is the Administrator of Parents Awaiting Diagnosis Need Friends. She can be contacted on Twitter @karen_sherman, or on Facebook.