Fighting for Freya: if not us, then whom?
Diseases
Genetic Disease
Issues and Challenges
Anne has encountered: Access to Expert Providers, Rare / Underserved Disease, Caregiving, Disability
My Story
When Freya was three years-old, we walked out of our local Regional Center for the last time. Shortly after, I received a letter from our RC telling me that Freya was not developmentally delayed and would no longer need their services. As the mother of a child with a disability in a world where most children around us were “typically developing”, I whole heartedly accepted. As the mother to a teenager with Prader-Willi syndrome, now well-versed in the challenges of this complicated genetic disorder, I am appalled and angry.
Their decision discounted the fact that she was still a wobbly walker at the time, or that the reason she was even walking was because of therapy she had been receiving since she was a baby, or that her little sister often helped to translate for her and that she was able to eat and learn to speak with a lot of help from an oral and motor specialist, or that I knew how to help her learn because teachers had been coming into our home to work with both of us. All services they had provided. They discounted the fact that my daughter has a genetic disorder she will never grow out of, one that requires a constant stream of learning, adapting, services, and supervision.
Freya, my daughter, is now 13 years old. She attends a small, main stream charter school, the same since she entered kindergarten, and receives services through the school. As we near the end of our time there and look towards a future outside of our sheltered cocoon of Waldorf-inspired education, I am terrified.
Terrified of what happens to individuals with disabilities without proper services or supervision. Terrified of what the orthopedist will say about her scoliosis next month. Terrified of not finding or being able to afford the right physical activities to help with her growth and development. Terrified of what will happen if she doesn’t make more friends before high school. Terrified of her not getting the one-on-one aide I’ve been requesting for the last few years. Terrified of what happens after high school if she isn’t connected to some kind of service-providing organization.
The Regional Center did us a serious disservice when they allowed me to think my daughter no longer needed their support. But I am no longer the vulnerable, overwhelmed mother who desperately needs to think her child will grow out of her challenges. I now see how parents have had to advocate for their loved ones and how wrong it is that we have to fight so hard. I now see that my daughter deserves to have chances and opportunities fitting for her and her abilities. I now see how critical this will be for her to have a safe, happy, fulfilled life.
I am now beginning the process of applying to the Regional Center again. I am terrified of the battle this may become, but I will not be turned away with whimsical thoughts that an encouraging pat on the shoulder and some words in a letter will help Freya succeed in life. I will not be convinced that because she can correctly perform some tasks on a relegated list means she can face the world at large without help. Parents should not have to fight so hard for their children to be safe and supported in this world, but if we don’t do it, few else will, so I’m picking up the flag for Freya.
My Motivation and Inspiration
My motivation is my daughter Freya, 13 and living with Prader-Willi syndrome. My motivation is all the incredible families and advocates I have meet and witness in the PWS community.
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