Helping See the Way to the Future

  When a child is diagnosed with a disability,  a family goes through a morning process.  They are morning the child they thought they were going to have as well as the life they thought their child would have. As with any emotional process this takes different people different amounts of time, and they do this in different ways.  As teachers we have to be sensitive to where parents are in this process, while still being sure to help them insure the best for their child’s future. 

    One of the earliest bridges to cross with this is getting them to sign up for housing and services lists.  These lists can be 10-15 years long. Each state has their own system and organizations, but it is important to get parents to sign up for these services.  Some parent will say that they are planning to have their child live with them or do not need the services. No one knows what the future hold.  Families can always turn down the services once their name comes up or defer services, but if they are never on the list, the options are closed for 10-15 years.  One way to put it to a parent is that it is a kind of insurance policy in case something was to happen to them.  There is a backup plan.  It is very hard for  many parents  to think of their own mortality at this point or what would happen to their child.  It is our responsibility to ease them into thinking about this, and help guide them to where they need to go.

   As children start to get older the legalities and issues get more complicated.  There are issues with guardianship, social security and other living arrangements.  Some parents are open to discussing these issues, while others are not. It becomes very complicated to take custody away from an adult if it is not done before the child turns 18. Being honest about the process is the best idea.  There is plenty of information about guardianship and social security available to parents, and they need to access it early to understand it all. Your job is to give them the informational resources, not to advise on financial or legal options.  Be honest about the child’s ability levels so they can make informed decisions.

  Our job as special educators goes far beyond just books.  It is our responsibility too get our kids and parents ready for life after school.