October seems to be the month dedicated to be aware. For me, the last twenty-one years has been pegged the month for Down syndrome awareness. For the last twenty years, I have participated by either sharing photos of Bailey via social media with inspirational words of experience or walking in our local walk to raise money for an organization that works to support families and Down syndrome individuals. This year I disengaged and here is why……I am aware. In fact, I am fully aware as I am living, breathing, advocating and quite honestly, exhausted from all the awareness.
Before you gasp in horror, listen closely. I have spent the last twenty-one years integrating Bailey into the community. Throughout his years attending school, I spent endless hours educating educators. Sounds redundant and it was. Now is the point in time where a job and living independently come into play. For those of you that aren’t aware of the facts, here they are. The reality is there is little to no housing available for these young adults. We have limited employers that will give our children decent jobs that could help them work more than 3 days a week. We have limited groups that parents can leave their young adult with if they don’t have a decent part-time or full-time job. A lot of the groups that parents could leave their young adults with cost money and many suck up the budget that has been allotted for a waiver that many of us have. It is a vicious cycle.
Twenty-one years ago, I thought we would be a lot further ahead. I thought there would be more living choices. I thought we would have a slew of career opportunities. And while steady strides have been made, we are still far from a society where our children are fully integrated. It seems to be a very slow process. Awareness is a small part of the big picture. And while the campaigns to enlighten the public are valid, action to see that our kids will be taken care of when they are older is vital now. Awareness is only as valuable as the action it takes to get us to the next phase.