If being an Autism parent was a video game, the difficulty setting would the three or four notches above the highest setting. That's not meant to be a joke. Autism Parenting requires more from a human being than most human beings are capable of. My wife and I are no exceptions to this.
Over the last seventeen years, we've had to constantly triage our life, shifting our priorities on a daily basis, in order to meet the needs of our kids. It's an exhausting way of life because there's always so much to worry about.
I wanted to address some things that my wife and I worry about as Autism parents, as well as, how we're addressing them in a positive and productive manner. I'm focusing on things that I have first-hand knowledge and experience with, but that is also likely to be common amongst Autism Parents in general. These may not apply to your life and that's cool, but please consider sharing them with someone who may benefit.
Medications As a special needs family, we have many medications in our house but we don't use medications unless it's deemed to be in the best interest of the person being prescribed the medication. In order to maintain safety in regards to medications, we educate ourselves before bringing any medication into our home. All medications are stored in a locked cabinet. However, for safety reasons, our kids know how to access and use emergency medications such as inhalers or EpiPens.
Being sleep deprived and exhausted Autism parents, we can make mistakes. Mistakes happen but with meditations, it's extremely important that we avoid those mistakes because they can have serious consequences. In order to reduce or eliminate the risk of giving the wrong kid, the wrong medication on accident, our meds are delivered in pre-dosed packaging.
This means that all we have to do is match the name on the packet with the name of the kid *and* know whether it's morning or bedtime. This has been a lifesaver when it comes to Gavin in particular. He's on a ton of medications but they now come in two packets, one for in the morning and one for bedtime. We've been teaching him to somewhat manage his own medications because it's important that he at least know how to do this. This approach makes that very possible for him to do so.
Check with your local pharmacy about receiving your medications in pre-dosed packages. Wandering We've been very lucky in regards to wandering because we've only had a few experiences with it over the years. Those experiences, while few, were the scariest moments of our lives, so we take wandering very seriously.
Wandering is something that roughly half of those with Autism will do at some point and it's extremely dangerous. It's only happened a few times to us and it was Gavin in all cases.
There is absolutely no way to prevent a child from wandering if they are intent on wandering. The best approach is to limit it as much as possible and immediately intervene if a wandering event occurs.
The best way I've found to help reduce the risk as much as possible is to employ technology that monitors every single exterior door and window in our home. That will at least notify us the moment one of these egress points have been compromised and allows us to immediately intervene. We also have motion sensing smart cameras in our kid's rooms to detect motion at night, while we're sleeping. If one of our kids gets up and decides to wander around the house, we're notified the moment they leave their room.
It may seem invasive but for an Autism family like mine, it's all about safety.
We use smart technology provided to Autism families by The Vivint Gives Back Foundation. This is a non-profit organization that provides families of children with a propensity to wander, free smart home technology to help keep their kids safe. The monthly monitoring service is based on each families income and in my family's case, we pay $15 a month. This has been a godsend because we couldn't afford this kind of thing otherwise.
For more information on wandering, click here. If you want more information on how we use this technology in our home, click here. Stranger Danger Many kids with Autism, like my own, are very trusting by nature. This can be sweet and endearing but also terrifyingly dangerous because they don't always recognize that strangers can pose a threat. It's very important to remember that kids with Autism tend to struggle in social situations. Reading and understanding social cues is inherently challenging for those on the Spectrum.
This is probably the most difficult thing my wife and I have to address with our kids. We can practice all we want but until they're in a situation where they need to respond, you have no idea what they're going to do.
My wife and I have been working with our kids from a very early age, about Stranger Danger. We've done our best to explain to them that they are never to go with or accept something from a stranger, especially if Mommy or Daddy are not present. I'd like to think that my kids understand how dangerous it is to go anywhere with a stranger, but the truth is, I have no idea how they would react. That scares me to death, so we continue to work on this.
One of the reasons this is so difficult is because while we never talk to or go with a stranger, there are times when it might be necessary. One example would be if they were ever lost and in need of help. My kids are typically all or nothing and understanding the difference here is not something that comes easily.
As such, all I can offer on this topic are some resources that we've found useful. I'm absolutely open to ideas and we can discuss them in the comments below.
A few years ago, CIGNA did a thing on Autism and Stanger Danger as part of a health series. Here's some information on how they worked with the kids and taught them about Stranger Danger.
I also found some information by The Cleveland Clinic and while it's not focused on kids with Autism specifically, the information may be useful nonetheless. Click here.
If something happens to me This is perhaps the single greatest worry that all Autism parents have in common. I can't tell you how many sleepless nights have been spent worrying about what would happen to my kids with Autism, if something happened to my wife and I. For an Autism parent, this is literally the stuff of nightmares because that fear is realistic.
For many families like mine, Autism Parenting is 25 hours a day, 366 days a year for the rest of our natural lives. For many, our kids will always need us to take care of them. They simply cannot survive independently for many different reasons. This isn't meant to be a stereotype either, so please don't be offended. It's simply the reality many parents, like myself, find ourselves in.
I always talk about how as Autism parents, we're still only human and have limitations. Our mortality is one such limitation and it's scary because we fear what will happen to our kids when we die. Who will take care of them? What will become of them in our absence? These are all very real and practical fears, parents like myself grapple with on a daily basis.
The truth is, I don't know what will happen and trying to plan for something like this can be extremely difficult because there are simply too many unknowns.
Like many of you, I was consumed by this fear for a long time. One day it occurred to me that worrying about this was understandable but at the same time, a waste of energy. My wife and I have a living will that dictates what should happen to our kids in the event of our untimely demise. The reality is that it's of little comfort because as I said, there are far too many unknowns to ever really prepare for.
What I can do is channel that energy into something more positive. Rather than worrying endlessly about the future, of which I have zero control over, I can use that energy to take better care of myself. I may not live forever but will live as long as humanly possible.
I've found that to be a better way of viewing this particular situation. Wasted energy doesn't do anyone any good. By focusing on self-care, I can be the parent my kids need, for as long as I possibly can.
Between that and commonsense preparedness (living will), I feel much better about what the future holds for my family. Self-care I basically touched on this above but it deserves its own sections because of how important it is.
You cannot take care of your kids if you forget to take care of yourself. We all have a natural instinct that compels us to always put our kids first. Unfortunately, as well-intentioned as that is, it's also misguided and even dangerous.
Putting every ounce of everything we have, into our kids is a noble, selfless venture. We mean well and in the short term, it might work. The problem is that this approach isn't sustainable long-term and if we maintain that pace, we are destined to fail.
In order to be there for our kids, we first have to *be there*. If we run ourselves into the ground, we're no good to the kids we love so much. Self-care is about not losing sight of the fact that as parents, we have very real limitations and needs of our own. If we don't take care of ourselves, those limitations will significantly impact our ability to care for our kids.
I've talked about the countless times, so I'm not going to go into it again here but you can read my words on this subject by clicking here. Just remember this, *in order to be selfless, you must first be selfish. * Conclusion Autism Parenting isn't easy and there are countless things we worry about on a daily basis. Sometimes this overwhelming sense of worry can cause us to lose focus and prevent us from addressing some of these common concerns.
My hope is, you can walk away from this article with at least some ideas that might help make your life as an Autism parent, a bit more manageable. Everyone's situation is unique and may require an approach that's equally unique. Your mileage may vary but we all need a place to start. Hopefully, this has helped to spark some ideas or connect you with some resources that can help.
Please feel free to ask or answer any questions in the comments below.
Have you tried any of these things? Have they worked or help in your situation? Did I forget something? I'm open to your suggestions because I'm living with these worries as well and can always use some new ideas to help me manage.
