 Conner, Dalton & I spent a fabulous weekend with our USH family. It unleashed a whole swarm of feelings and revelations.
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 Sometimes, as moms, it gets to be too much. Especially if you are a mom of children with disabilities. This blog is for all the moms, to let you know you are not alone, it's ok to break down and you will find your strength again.
 As I struggled on my journey to help my children who are deafblind get the education they deserved, I finally realized that teaching them to advocate for themselves not only resulted in success at school, but in life as well.
 I am the mom of two boys who are deafblind resulting from Usher syndrome, our oldest being 22. I did not learn about the Expanded Core Curriculum (ECC) until our oldest son was in high school. Until that point, our son’s Individualized Education Program (IEP) team was focused solely on supporting his academic progress. He also had an orientation and mobility specialist who worked with him on cane skills and a teacher of students with visual impairments who consulted on an as-needed basis. Once I started researching the ECC, I saw that self-determination is one of its nine core components and became interested in learning more.
 This is the time of the year when I like to reflect on what I’m thankful for. It’s been a really rewarding, yet challenging year.
 We've been busy since moving to the Ranch and I'm giving you an update on our progress, what we've learned about ourselves and how living with the animals is impacting all of our lives.
 The pandemic challenged our way of thinking about education and, as I look back, I realize that the past year has given all of us opportunities to become better leaders.
 Guest author, Divya Goel, shares her journey to self-advocacy and living her dreams as a young woman with Usher syndrome.
by Nilam Agrawal  I wrote this poem in May, 2012 when my daughter was 2 1/2 years old. She was acutely sick with H1N1 and had to be intubated. She went from being a sighted child, to suddenly losing all of her vision in both her eyes (she started losing her hearing 6 months before that due to an episode of high fever). For 3 long weeks she was in a world of total darkness and total silence. Then, she began to see in low lights and regain some of her hearing. That episode was a new turn in our journey. My husband and I were hurting and nervous. She was scared and lost. We had no idea what help we needed or how to support her. I wondered, if she could say what she was feeling, what would she say? I wrote this poem to help me find a purpose and find something to hold on to when I was struggling to even breathe. For the next 5 years, we went through two different medical (‘mis)-diagnosis before receiving the correct diagnosis of Usher syndrome for both our kids in December 2017 (a decades-long medical journey that started with our older son in 2007).
 In the early months, when you know your child is struggling to learn but you don't know why, you can feel very alone. I know I did. Here is what I learned on our journey to getting support for my son. |
AuthorLanya (Lane) McKittrick is the Chair of the Board of the Usher Syndrome Coalition, founder of the Hear See Hope Foundation, and deafblind education researcher and founder of Lane of Inquiry. Lane received her PhD in Special Education at the University of Northern Colorado. Her research, advocacy and family support work are rooted in her personal experience as a mom to four sons, including two who have Usher Syndrome, the leading genetic cause of deafblindness. Archives
July 2022
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