In the week or so since I shared the “My broken Heart” story about the bare handed man I’ve had a lot of time to think. Well…not really a lot of time to think….but thinking a lot of the time. This experience really knocked the wind out of me and has
me really worried about the future of my children. I wanted to share my personal fears about the future as well.. I have tried to articulate exactly what my fears are but I really struggle with finding the words. I very much would like EVERYONE in the world to know why I fear the future. I take that back because, honestly, KNOWING why I fear the future really isn’t enough. I need the world to UNDERSTAND why I fear the future.
Most, if not all special needs parents share at least one thing in common. That one thing in common is a fear of the future. I constantly ask myself, “what will happen to my Autistic children if, God forbid, something happens to my wife and I?”. Who will be there to finish the journey with them, if we cannot? What kind of support will they have? Will they end up like the “bare handed man”? I watched as he simply tried to help someone only to have that person try to run him over with her car. Is this what future holds for our special needs kids?
This is a fear we all have in common, yet rarely ever talk about. It reminds me of a book I read to my kids, “The Monster at the End of This Book”. In this book, Grover fears there is a monster at the end of the book. He spends the whole time trying to avoid even thinking about the end of the book. He does everything in his power to keep the pages from being turned, thus never arriving at the end of the book and having to face his fear. We, as special needs parents, CANNOT stop the pages of time from turning by simply avoiding the discussion. Like Grover, we can’t stop the future from coming no matter how hard we try.
I have been more stressed out then usual since I experienced this event at the Giant Eagle last week. I can’t stop circulating the same thoughts over and over in my head. Will that be Gavin’s future? Gavin is my 11 year old son and the oldest of our three special needs kids.. He suffers from Autism (more specifically Aspergers), schizoaffective disorder and quite a few other, major mental health issues. Gavin will likely never be able to function independently without some type of supervision. What happens if I’m not here to supervise him? I get sick to my stomach just thinking about it. No matter how much I may wish otherwise, I won’t live forever. Avoiding questions about the future won’t prevent anything from happening. No matter how much we as special needs parents try, we will NEVER be able to stop the pages of time from turning. At some point, whether we like it or not, we will reach the end of our book. What we find there will depend on what we do to prepare along the way. While we CANNOT avoid the future, we CAN do things to shape it.
One of the most important things I can do besides prepare my children for the future is to spread Awareness and provide the means necessary to foster understanding and compassion. I will do that by continuing to share our story with as many people as possible. I strongly encourage you all to do the same. We as a society need to teach our children from a very early age to be understanding and accepting of children that are “different”. We need to teach our children to stand up for the weak, comfort those in need and show compassion whenever possible. By teaching this to our children now, we can help to avoid our special needs kids from ever having to endure what the bare handed man did.
We only get one chance at life. Inside of that one chance is our only chance to help make the future a brighter place for our kids. Will you try to stop the pages from being turned or will you face each page with courage and hope? Will you avoid thinking about the future out of fear or will you use that fear to drive change and help build a better future for ALL our children?
Please click the “share” button at the bottom of this post and help further the discussion, spread awareness and brighten the future for all our kids. You may not have special needs children but your kids can make all the difference in the world to ours.
Well said, Rob. This can be applied to all walks of life as well as special needs children and their parents. I had that Grover book as a kid and I loved it. Another cool Sesame Street book involves Cookie Monster and The Talking Cookie Tree who won’t let Cookie Monster have any cookies without sharing them. You should try and find that one and read it to your kids.
Dwayne Murphy we actually have that book. The boys love it. Haven’t read it in awhile though, so I’ll have to dig it out. 🙂