Advocacy efforts bring others' understanding of my daughter's unique challenges due to special needs
For the past decade, a dedicated mother has been shedding light on Angelman Syndrome, a rare genetic disorder, through her writing. Her daughter, Juliana, is one of those living with the condition.
In her latest article, titled "'They matter too'," the author expresses her frustration over the exclusion of special needs students, including Juliana, from yearbooks. This is not a new issue, as similar cases have been reported in different states, some dating back to 2001.
The mother's goal is not to reach everyone, but if she can change just one mind about Angelman Syndrome, she will have reached one person who will see her daughter. She writes about Juliana not just to highlight her challenges, but to show her capabilities and beauty.
The school involved in the latest case has apologised for the omission, attributing it to "human error." However, it remains unclear what will be necessary for such omissions to stop occurring.
Juliana, despite the challenges, has been taught and loved by Teacher of the Year recipients, supported by wonderful therapists, and administrators who recognise her and her classmates' uniqueness. The author prefers to highlight these educators and officials who get it right, rather than calling out mistakes.
The mother of Samir Azarpira, whose son was also excluded, does not want a refund, but wants her child to be seen and acknowledged.
The author's work on Angelman Syndrome is not just about raising awareness, but sparking discussion about the issues pertaining to the condition. Her articles, published on Angelman Syndrome News, a website that provides news and information about the disease, but does not offer medical advice, diagnosis, or treatment, are a testament to her dedication.
The author continues to write and advocate for her daughter, reaching out to those outside of their positive circle of influence. She is grateful for those who see her daughter in a special way, but many strangers do not know her or understand Angelman Syndrome.
This issue of special needs students being left out of yearbooks brings attention to a problem that's hard to face and resolve. The author hopes that her articles will contribute to a more inclusive and understanding society for those with Angelman Syndrome and other special needs.
The opinions expressed in the article are not those of Angelman Syndrome News or its parent company, Bionews.
