Monday, January 5, 2015

The new year

We ushered in the new year quietly ... it has been a year of hope, a year of change, a year of turmoil and a year of determination.

This year we joined the many individuals with autism who develop seizure disorders in their lifetime, and that was a club I was hoping not to join.

Little is said of adults with autism - and when I think of autism support - autism awareness  - I think of the preschool kids, the young toddlers newly  diagnosed struggling for answers. If I have learned something over these last 17 years I have learned there are no solidly true answers...there are only more questions.

With all of the support, all of the awareness the problems remain, the lack of activities, engagement and stimulation remains  outstandingly lacking.  There is an imaginary cliff that at age 18 or 20 drops individuals with autism into a swirling pot of uncertainty... where to  now? what's next?

The support these individuals and their families received  during the school years has been abruptly stopped. There is no "college or post high school next step."  There is loss of routine, loss of a purpose, loss of the social encounters that had happened daily  during school days turning into isolation, withdrawal, and regression. Skills learned now become skills lost.

Parents are left with tough choices: Place their now young adult children in supervised day programs... look for placement in group homes... hope for a budget to allow them to receive services at home and in the community.. or support their children themselves becoming caretaker, teacher, nurse, behaviorist, cook and chauffeur. It is a life long committment.  

It is not one that I shy away from but I am deeply in awe of all of the parents who do this every day like myself... it is overwhelming. Some days  more than others.

I live in the moment, as does Andrew... and we applaud the families who are making strides and providing an enriched environment to their sons or daughters with autism.