When families are running the race for recovery or to simply improve their child’s quality of life, the here and now can be rather demanding. Each year that passes we are faced with meetings outlining school objectives, therapy programs as well as what interventions will be focused on for the immediate time ahead. Each of these elements is critical in the development of our children’s life skills but many times we are so consumed with the here and now that what was once perceived as the future over night becomes today. Planning for life after the public education system is no longer responsible to fill the day time hours of our children is scary and daunting. Parents of older children are faced with the harsh reality of what is or is not currently available and parents of small children are overwhelmed with early intervention programs that they do not have the energy to look beyond today. The truth is none of us want to face the question of “Where will our children be in 10 years or as an adult”. If we contemplate the thought of our children needing life long care it seems to dampen our hopes of a favorable outcome from everything we are doing now. Many parents will not go to that place as they feel it is a sign of weakness or admitting defeat in the battle to reclaim their children from the stronghold of autism. Many of us will even convince ourselves that if they can talk and read and do their own self help and management that they will be just fine. Unfortunately I have found that many children who can communicate as well as those who are non verbal will need some form of support throughout their life. It may be a break down in appropriate socialization or the inability to communicate at all but there will be the need for assistance.

Throughout the years I have gone through the stages of being the complete optimist in that my son would recover from autism and be able to live independently to thinking that if we just had more hours of therapy we could reach a place of normal communication only being a few years behind developmentally. Finally, at the age of 13 I have found a place of acceptance that at some point we will be faced with the need for assisted living and long term care. In no way is that statement one of defeat or complacency but one that recognizes that in order to provide him with the best quality of life I must face head on his needs for the future just as I do with his needs for today. Not a day goes by that my main objective is anything less than full steam ahead towards a life of recovery. Now, it is just slightly tempered with a hint of reality. The reality that as parents of children on the spectrum every step forward is usually calculated and planned, requiring effort and well thought out implementation. I personally had always imagined Jacob would live with me as an adult. Why would I think anything any different? I love my son beyond words and who would care for him better than my self and his immediate family members?

As my sons thirteenth birthday edged closer I found myself seeing today and tomorrow much differently. I began to think of the situation from Jacob’s perspective and not from mine. As mom, I could never imagine being apart from my son. He and the autism diagnosis had forever changed my life, the people I call my friends, the line of work I am involved in and ultimately the passion I live each day with. I have to be objective and think about the structure and support that need to be in place for him throughout his life as an adult. What would he do when my time on this earth were over and how would he be able to cope with so many changes? Throughout the past year I have had friends and many friends of friends pass away in the blink of an eye. For a parent the thought of dying while having young children is scary but for a parent of a child with autism it is inconceivable to consider. My thoughts came down to two things, how would Jacob handle his primary source of support, care and love being gone much less having to under go changes in where he lived and who would care for him. It was at that moment that I realized the greatest gift I could give my child as well as the rest of our family and friends was the gift of planning for his future while I was here to oversee, develop and teach people what he would need to live a happy and fulfilled life.

I began to look at what resources and supports were available for individuals with special needs within my state. I was taken back and heart broken by the resources that were available in Texas. I realize that each state and country has areas of weakness in social services or supports but I was astonished at the severity of discord and brokenness of our state institutions aka “schools”. I wanted so desperately to believe that there were programs for our children that were positive, loving environments but these are few and far between. I found that Texas has more individuals living in institutions than California and New York combined. We also have the distinguished pleasure of having more children in institutions than any other state. How could this be? With the evolution of medical and behavioral sciences this was the best we can do? Stories of abuse and neglect within these state facilities began to further emerge the beginning of this year with stories of workers staging fights amongst residents in the Corpus Christie State School in February and then in March it was made public that a worker at the San Antonio State School had orchestrated sexual interactions between residents against their will. My stomach turned inside out as I read of these atrocities. My point is not one of fear or gloom but one that stimulates a sense of urgency for us as parents and political leaders of the world to act now. Autism knows no boundaries of religion, ethnic or socioeconomic stature. The wave of young adults with significant cognitive impairments is gradually rising just as a wave in the ocean silently gains momentum until its crash is heard breaking against the shore. The waves of autism are silently gaining momentum and as world leaders and political figures look on. Each of us must recognize the need for immediate attention to health and human services as legislative sessions begin to wind down.

Over the past year I have come to find people who could be called nothing less than trail blazers who are demanding swift and concise change in the structure of Texas broken state school model. Community Now is an up and coming advocacy group comprised of parents and professionals from diverse backgrounds that encompass physical and intellectual disabilities. The objective for this organization is to simply ensure that humane environments are available for long term housing and care for individuals with diverse special needs within their communities. This is a simplistic statement and in no way adequately describes in detail the specific goals or agenda of this group but it does explain the core essence in of why this organization has been formed. In my humble opinion, Texas is the canary in the coal mine that indicates the direction that many other states and countries will be facing if action is not taken immediately. I encourage each parent, professional and political leader to take the time, even if just one afternoon to become familiar with the life long services that are currently offered for individuals with disabilities in your area. On Friday May 22nd 2009 the Autism One Conference in Chicago will feature people from around the world in a forum to address the planning of residential living models. While politics, and health and human service issues can be intimidating to understand there are trail blazers across the world that are willing to lead the way to change if there are concerned individuals willing to provide support. Treasure today, live for tomorrow and plan for the future! For further information visit www.autismone.org for more information about Community Now! Visit www.communitynowfreedom.com.