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Back to School

The Rare sisters got to go back to school today. Finally. It has been since March 13th that they have been inside their school. The amount of decline we have seen in them since March is maddening and sad. We have opted to not engage in any kind of remote learning, because it is not an appropriate way to "educate" them. Remote learning is a sick joke for blind, cognitively declined, demented children and their families. They can't see the screen, they can't work a computer, and every single piece of curriculum has to be modified for them, therefore, there is no replacement for in person school for Cecilia and Lilly.

Our district started school remotely on August 24, and are supposed to be back to in-person learning on September 8. We worked out a plan for Cecilia and Lilly to be able to go to school starting this week for three mornings. Although their peers aren't there, they get to go and have had the opportunity to meet their teachers, and re-familiarize themselves with the building.

It has become abundantly clear to us how unfair, unbalanced, and inaccessible the school system is for our Batten girls when a one-size-fits-all approach is applied, and education is restricted to remote learning. We are grateful that most families in our area do get to choose the schools that work best for their kids/family, (us included for our littles). With special needs kids though, there are very few options, and they are only available through your public school district. The choices for our Batten Girls are: 1)Mainstream public school with the maximum amount of IEP supports available, 2) Mainstream public school in a SSN (Severe Special Needs) classroom, or 3) Public school for the deaf and blind. Right now, we are at option 1, but will probably be at option 2 for Cecilia next year when she goes to middle school. Option 3 is not appropriate for them. Charter and private schools simply do not have the resources that they need. And homeschooling? Well, let's just say that would be a dangerous endeavor for us. So, really, we have one option and since our girls cannot be appropriately engaged in education through this option, they become invisible. Nevertheless, we are grateful that they get to have access to their amazing professional educators this week, and hope that the school year has minimal interruptions.

The past few months have been difficult. Both have lost a significant amount of vision and fatigue quicker than we expect. We are seeing balance issues, speech declines, and severe behavior with Cecilia. Lilly's has had several seizures over the last few months. They have been strange and unpredictable. She's had several ER visits and a couple of ambulance rides. We have started the process of getting strollers for each of them, and a car seat for Lilly.

They've had spotty access to therapists. Fortunately, many of their therapists are now back to working in person with them, but it's been a long road. The biggest loss was horse back riding therapy. When their center closed down in March, we noticed a big change. There is so much benefit to the horse therapy: physical strength, postural strengthening, left-right brain function, socializing, and independence. They still don't have access to horse therapy.

We are hopeful that the start of school is stable and can provide both of them with the supports that the need to maintain the skills they still have and give them a better quality of life.

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