When you first hear the word *Autism* associated with your child, every single aspect of your life changes. I've experienced that life-altering moment three times now and it never got easier to hear.
I spent so much time simply trying to survive the daily battles while they were younger and frankly, I still am today.
When you're an Autism parent, planning ahead doesn't always work out. In our case, we rarely planned ahead because it became clear that we were destined to live moment by moment, never knowing what would happen from one to the next. That's just the way it was for us and truthfully, almost 18 years into this journey, we're still living moment to moment.
When you're living in the trenches, trying to survive from one moment to the next, the idea of planning for the future is sometimes non-existent.
As an example, I know how important it is to financially plan for the future. Saving for things like college or even retirement are critically important. When you're a special needs parent, on a limited income, just trying to make it through the day, that kind of planning isn't always a priority but it is very important.
In our case, we've always had to be careful because Gavin is on disability and there are income requirements or limitations that we have to be mindful of in order to ensure Gavin's continued insurance coverage. When we first started, my insurance wouldn't touch Gavin because nothing Autism related was covered. Disability ensures that his health care is always covered. As a result, we've not planned for the things like retirement. In fact, we live very much day to day, without the ability to absorb anything unexpected.
At the very same time that life has me so overwhelmed that planning for the future isn't on my radar, thinking about the future and what will happen to my kids with Special Needs if something happened to me, is all-consuming. It's sort of an oxymoron I guess because it's like I'm terrified of the thing I'm too overwhelmed to think about.
It's never too late to start planning for the future. This is very important but doing so can be extremely intimidating. I'm working with Voya Finacial, my brand partner, to help raise awareness for the importance of Special Needs families to plan for the future. Voya has some amazing resources to help you make sure your loved ones are cared for. It's not something any of us want to think about but not thinking about it won't make you any more prepared in the event that something should happen.
I'm now 18 years into this journey and things are beginning to pop up on my radar that simply didn't until now. Maybe I was just so overwhelmed that I missed them before but now they're staring me right in the face.
My wife and I are learning to navigate our oldest son Gavin’s transition into adulthood. I'd be lying if said it's been a graceful process because it hasn't.
We're facing things now that we hadn't thought about before.
Gavin's an adult now and we're trying to ensure that he gets as much independence as he can safely have. Part of that is continuing to build skills that can help him to care for himself, better navigate the world around him, and maybe even find some kind of job.
Gavin is challenged and while he struggles in many areas of his life, he's not without his strengths or things that he's good at. He has things he can offer the world, as well as employable skills. Until recently, we were so focused on survival, we failed to really prepare for this.
You probably don't know this but October is National Disability Employment Awareness Month and yes, it's a mouthful. It's also something that's really important to become aware of. NDEAM is a national campaign that raises awareness about disability employment issues and celebrates the many and varied contributions of America's workers with disabilities.
The theme for 2018 is "America’s Workforce: Empowering All” and the trending hashtag is #GettingToEqual.
This is a time when we are reminded that people with Special Needs or disabilities have some amazing things to offer the workplace and have a right to gainful employment, as well as a fair wage.
It's about educating companies on how inclusion and hiring people with disabilities or special needs is good for business.
I wish we had better prepared for this phase of Gavin's life because helping him find some form of employment would be awesome for him.
Gavin absolutely loves cleaning, is incredibly creative and is always looking to help others. He needs accommodations but he also brings things to the table that no one else could. An employer could absolutely benefit from his cleaning abilities, creativity, work ethic, willingness to help and his ability to get along with everyone. What can I say, he is awesome!
The point is, these are things much better thought about in advance and prepared for over time. My hope is that you read this and it sparks a conversation within your family because it's never too late to plan for the future and never too early to plan for the transition into adulthood. The more time you spend planning and preparing, the better off you'll be.
So tell me about you.
Do you have a special needs family member that is active in the workforce or would like to be? What has your experience been?
Share your comments below and let's see if we can learn something from each other.
