Dream of a Kenyan child with a disability! AKA ndoto ya mwana mlemavu

Dear Friends and Family Caregivers, Making our own decisions about where and how we work, live, play, and access needed services is critical to improving our quality of life as adults—and teaching our children how to do this is an important part of our job as parents and educators. For children with disabilities, this skill is especially essential. People with disabilities are too often treated as passive recipients of what may be well intended but misguided and patronizing efforts to help them—efforts that can disempower self-determination,  cause dependence, and limit options. Building the capacity of children with disabilities to become independent decision makers—to the maximum degree possible—is a vital responsibility parents and educators have as we teach our children to move from riding in the passenger seat to making decisions about their own lives. Even for children who may never be fully independent, our goal must be to ensure that, to the greatest extent possible, the passions, priorities and preferences of the individual are at the center of our planning, teaching and service delivery. For students with disabilities, teaching self-advocacy ensures that students: * Are able to appropriately describe their abilities and needs, and the accommodations and assistance that support their learning * Are actively involved in setting realistic goals for their learning * Know their rights and how to use them effectively * Understand and honor the rights of others * Take responsibility for their own health (mental, physical, sexual) * Make and effectively communicate choices * Learn how to interact with those in authority-teachers, therapists, doctors, law enforcement, judges and others who may exercise some level of control over their choices and options * Know how to ask for help and fix mistakes One of the best places to start teaching children about self-advocacy is in IEP or children clubs meetings. Including them in meetings provides an opportunity to learn and practice important life skills. Even very young students can: * Understand  more about their disability and how it impacts learning * Hear about and contribute to discussions about how things are going * Participate in goal setting and team decisions * Learn how to communicate for themselves and make choices The IDEA (Individuals with Disabilities Education requirement that students be invited to their IEP meetings by the age of 16. Studies should be introduse so as to sho that the sooner students get involved in their own meetings, the faster they learn to advocate for themselves. Even when students do not speak, they can often indicate consent in other ways with the team's help to make their feelings known. Parents tell us that when the student attends the IEP, there is often a more collaborative feel to the meetings, because what is at stake—the future of a child is literally present during the process. If you feel your child is too young to participate in the entire meeting, or that some of the discussion (the results of a mental health assessment with sensitive information, for example) may be too difficult, you may choose to include them for part of the meeting only (for example, goal setting or discussions about services), or to get their input in other ways, such as a video, a written statement they dictate to a parent or teacher, Skype, or even a picture they draw or photo you take of them that helps the team see the "whole child."  Generally, information shared in a meeting about a student should be shared with the student in an appropriate way. If a child is very resistant or anxious about attending, don't force it—but do think about including a proposed IEP goal focused on helping the child learn these critical skills as part of their education program the following year. Try to get their input in video, audio or written form ahead of time. And always insist that the IEP be "strengths based" so that a child doesn't experience a meeting about their "deficits" only. These meetings should always include a celebration of the student's successes and strengths, and identify areas that the team, as a whole, needs to focus on in order to improve the educational outcome of the student. Focus the team on helping the student enter adulthood with a "toolkit" of essential skills and experiences they can use to build their own future. Parents sometimes tell us that they don't want their child to come to a meeting because they fear that hearing about the disability may make their child feel "bad" about themselves. But in our experience, the sooner a child learns that disability is part of the human experience – the sooner they can come to accept the disability as one part of who they are. Learning about disability history and pride allows a child (and an educator) to reimagine diversity as a strength. This helps students better advocate for the support, services, and opportunities that will help them achieve their dreams while proudly claiming all parts of their identity in addition to reminding them that they are not alone. Reminder: Get involved and become a leader! I hope this dream of mine will not go in to the thin air. one day Kenyans with disabilities will realize. udongo ubatilize ungali maji. for more read www.mugambipaul.com