When I worked at the Christian Broadcasting Network, it was known that I was a parent of an autistic kid. And I had the opportunity at times to share a little of my story in midday chapels. After all, the opportunity to share a bit of autism awareness and understanding should be shared if it is made available and I’m very grateful I was able to share some insight as I was learning as much then as I am trying to now.
One thing I don’t often share is why after so many years I am more involved in the community now than I was before. To some, it’s teaching the world about autism from a dad’s perspective. And yes, I do that when it is possible for a teaching moment to occur. I’ve also shared openly that my selfish goal is to learn more about my son… and that has always remained the case.
But this journey has shown me one inherent truth: this effort is not just about my own selfish needs or desires. Over the years I’ve seen far too often news reports that break my heart. I’ve read thousands of articles on Autisable that have offered some deep insight into the thoughts of other parents and autistic individuals that have both enlightened – and were also warning signs.
You see, years ago I was talking with my good friend Rob Gorski about the news of an autism mom just ‘snapping’ and committing the worst thing any parent could think of doing… harming their own child – and then themselves.
We’ve also talked regularly about those kids who have a tendency to elope at a moment’s notice at any time of the day, being found later – in the worst of circumstances.
We’ve also seen too often in the news, as well as in online support groups, where our autistic kids are being bullied soo much, and those same bullies are encouraging our kids to kill themselves… and find out when all this happens that the schools take no action.
There was a period of time when we’d see these stories happen almost every month. Years would pass by for these families and they’d set up a routine and structure to make their lives and lifestyles manageable. Then, their kid ages out of all of the services made available to them. They had no outlet, no friends they felt they could open up to, no safety net to help them as their kid got older… and then… they’d mentally snap.
This week, I share more about this topic on the next edition of the Autisable Dad’s Podcast.
I could cite several of these situations, but I won’t. Not because I don’t want to, but there’s just too many to count. You can do a google search and you’d find at least half a dozen or so, and I personally don’t want to relive each one of them.
Over the years a few hit a bit close to both my friend Rob and I, as the warning signs were there. The writing in their own personal blog posts showed some signs. Hindsight is always 20/20, and over the years we started seeing trends, we’d comment on their blog posts more, we’d provide some encouragement… some practical advice where we could. In short, we attempted to let other parents know that it’s ok, and ask if they have any help to address those needs.
If possible, we’d spread the news of their story and encourage people locally to them to help out with simple things like some respite.
Now here are some basic challenges parents have as their kids get older over the years…especially for parents of autistic kids that are nonverbal and who may be considered more ‘severe’:
- Many autism families may have friends or families that have distanced themselves. So the feeling of friends or family that aren’t around – the loss of not having friends or family that could help when times are tough is very present.
- Financial hardship is very real. Many autism families have to pay out of pocket or navigating what insurance will and won’t pay for is also a challenge. This impacts any extra help that requires any financial needs – not just paying the bills. Such things as estate planning and any other legal needs also come into play.
- Relationships, in general, tend to be secondary as their special needs loved become the primary focus. Not to say that it’s right, it’s just the reality at times for many families.
- People tend not to understand the difference between routine vs schedule, and finding any help at any level is like panhandling for gold. It’s a lot of work and it’s never-ending.
- Parents have been told to trust professionals, and sometimes that works. Often, however, it is the professionals that aren’t as transparent or truthful about what is or isn’t available. This reinforces a parents distrust of any professional.
- Being an advocate for our kids who are bullied on a regular basis and who often are told to kill themselves – and the schools not taking any action.
As I write this, I’m reminded of these parents and their personal struggle of not being able to feel as though they could’ve reached out for help. Everyone needs an outlet to express their own journey, where they need some assistance… .and what their needs are.
For example, writing to me has become cathartic, allowing me to express my own thoughts over the years. It is a bit of stress relief to share these insights so as to pass along some knowledge and understanding that I’ve picked up over the years. Sometimes it’s just easier for me to write things out so I can make sure the message I’m writing makes actual sense. It seems I’m not the only one who does this, as there are many neurotypical parents like myself who do this as well. If we need help, we will express it.
But some folks are unable to see the forest through the trees. They don’t know how wornt out they are mentally. How sleep deprived they a really are.
Parents of special needs kids often have a few extra roles they must fulfill: that of a fighter, and that of a caregiver.
We fight regularly for services, for education, for awareness, and understanding. Because in our mind this fight isn’t just for our kid – it’s for every single family that is going through the same situation. For me, I refer to last week’s note on how many people we’re talking about… it’s in the tens of millions of us.
Living what people don’t understand, because they don’t live it.
While we live our daily lives and are involved regularly in this fight, we are also spending countless hours caregiving. Making sure our kids are learning to be more independent, but also making sure they are being taken care of 24/7.
To some this effort is all about autism awareness and understanding. To me it’s about ensuring that parents have the resources necessary to help their kids so they don’t ‘snap’ and do the worst thing imaginable. To me it’s making sure our autistic kids aren’t bullied to a point of doing a level of self-harm that goes beyond any form of meltdown.
For me, this is a matter of life and death. I hope this explains why us autism parents are a bit more passionate about such things as IEPs, IDEA and the ADA. To us… it’s the future of knowing our kids will be ok.
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