Special Needs Parenting :: What Now? - by Carey Nelson Handley
Children are born and, through the years, we give them the best foundation to help them navigate adulthood once they are ready to leave the house. In ‘typical’ families, children find their footing both through the things they learn from us and those things that they learn from their friends. Through it all, they find out who they are and decide who they want to be in the future. They often decide what college or trade school they will attend, what job they want to hold, where they want to live and who they want to date and, eventually, marry. In many cases, parents have little, if any, say in these decisions.
For those of us parenting children and young adults with Special Needs, our child’s adult life is often a continuation of their childhood. Not much may change in our child’s abilities or capabilities and we are often left making unilateral decisions on our child’s behalf. A significant difference between our children and their neurotypical counterparts is that our children may attend school for several years after the age other teens graduate. By law, our children are entitled to several more years of schooling to give them as much educational and life skills support as possible.
We knew early on that our daughter would never attend college, drive, vote or, in all likelihood, marry. While we never stopped believing she could progress, we knew in our hearts that there were limitations. Rather than get lost in our significant grief over the things that would never be, we instead channeled our energies into finding situations that would be good for her and make her a productive member of society.
First, that meant filing for Guardianship so that she would remain protected and under our care. We opted for full Guardianship because we recognized she was unable to make important life decisions for herself. We also filed for SSI (Supplemental Security Income) on her behalf. We had added her to the Medicaid Waiver Interest Lists years before and were waiting for her numbers to be called.
We then found internships and work programs that would match her interests. It was important to us that she remained busy and productive during the day. This is a huge concern for many parents of young adults with Special Needs. Their child has gone from five full days a week of school to nothing. Finding a suitable program or job is sometimes difficult and takes quite a bit of research and planning. Looking for a job outside the Special Needs community meant finding an employer willing to take the extra time needed to train her and reinforce her skills. We researched programs and jobs both in the Special Needs community and in the general public so she would be exposed to a variety of people.
For some, there are college programs specifically geared to individuals with Special Needs and the skill level of these classes varies. Many of our children with Special Needs want to feel that they have something to contribute. I also believe the world is a better place when the community is touched by the very special gifts that our children have to offer.