Independent living alliance
A PARENT’S PERSPECTIVE
It began as an overwhelming, shattering diagnosis a couple decades ago. ALL of our energy and efforts were suddenly focused on our child….a fierce need to make him feel loved, nurtured and protected as we began to navigate a whole new and unexpected world. This new world was filled with therapies, appointments and constant advocating in an attempt to help him maximize his potential. Not a day went by that we weren’t juggling the making of educational decisions, challenging professional’s opinions and being on the constant look-out for a cure/treatment/miracle, all while caring for a sometimes very challenging child. Throughout this time, we were always seeking social opportunities to prevent him from being or feeling isolated and trying to create a more inclusive community environment for him.
As time went on, several realities became undeniable: the reality that our special child will require supports for the rest of his life; the reality that we, his parents, will not always be here to love, provide for, protect and advocate for him; and the reality that we may not be able to rely on his siblings or extended family to step in after we are gone to fill our role.
These are harsh realities to face alone. Fortunately, throughout the journey with our special loved one, close bonds were formed with other families on the same journey. We shared information, supported one another, and learned how to advocate together. Friendships formed between the parents and the children that have been ongoing from childhood and now on into their adulthood.
Together, we are embarking on a mission to find a safe and supportive living situation for our adult disabled children that they can remain in for the rest of their lives. Independent Living Alliance may help our dreams, and those of our adult children with disabilities, come true.