I have reached a point where I feel it may be time to re-evaluate a lot of things. Raising 3 special needs kids and trying to care for my wife is like 4 full time jobs. It literally requires every ounce of everything I have. If I had an unlimited supply of “everything” then it wouldn’t be a problem. You may have guessed that I don’t and so it is….a problem. I’m stretched WAY to thin and it’s like I can feel the fibers that make me who I am beginning to snap under the constant, ever increasing tension. I need to re-evaluated my priorities.
When you have to quit your job to stay at home and take care of your family there are sacrifices you have to make. You re-evaluated your spending for example. We got rid of all the “non-essentials” we could, cable, land line phone and dining out (just as a few examples). I feel that I have arrived at a point where I need to re-evaluate the way I spend what little time and energy I have. Right now I devote the vast majority of my time to my kids. Second place goes to my wife and that’s ONLY because the kids come first….period. Third place goes to trying to etch out an existence for my family, figuring out ways to provide for my family, this blog and my Android development.
It already seems like my priorities are in the right place. The only thing I could cut back on is the Android development I guess but that is a HUGE platform to spread Autism Awareness and that IS a priority for that reason alone. This blog is one of the few things that makes me feel like I’m actually accomplishing something. When I share my story I feel (whether the effect is real or imagined) like I’m making people more aware of what Autism can be like in “real life” and by making people aware I’m helping to make the world a better more understanding place for my kids. It’s also a place for me to put my thoughts and feelings out there and be able to walk away feeling a little lighter….if that makes sense. So where do I make the cuts?
I have SO many ideas for this blog. I have ideas to reach more people and ideas to better help the ones I’ve already reached. I have ideas for spreading even more Autism Awareness with my midNIGHT ROM and Android development. I just can’t find the time or energy anymore. Writing anything meaningful is just so exhausting for me right now. One of the reasons I started blogging in the first place was to give my family and friends (the ones we had left) an unedited view into our daily struggle. I was hoping that if they saw what we were going through or how much our kids (their nephews and grandkids) were struggling they would be more supportive. I thought maybe they would understand why we can’t do the things they all do. I wanted them to FINALLY “get” the fact that we DID NOT isolate ourselves by choice. The sad truth is that most of my family NEVER takes the time to read anything I write. They invest NONE of their time in any of us. I find myself asking what’s the point. Am I actually making anyone more aware and understanding? Will the world be a better place for my kids because of anything I’m doing? The answer is, I don’t know…….
I have been really thinking lately that I just can’t keep this up. Something has to give and that something CAN’T and WON’T be anything related to my kids and their needs. I’ve set myself up to fail with unattainable expectations for myself. I see everyone around me, especially in the Autism community and it seems like they do SO much more then I do. That really bothers me because I feel like I should be doing more in order to ensure my kids have an understanding and more compassionate world to grow up in. I feel like I’m “short changing” my kids by not do better. I have given this a lot of thought. I think my problem (if it’s even a problem) is that I’m simply to busy with the minute to minute responsibilities of being a father to 3 special needs kids while at the same time “trying” to take care of my wife to do anymore then what I’m already doing. Perhaps I should cut myself a little slack and take stock of what I have managed to accomplish in the face of so much adversity. I just don’t know anymore. I’ve been doing this for so long and I’m tired. I thought that figuring this out would make me somehow feel better. However, coming to this realization still doesn’t help me with the re-evaluation of my priorities but it does take some of the pressure off….for now.
-lost and tired
Your blog has really made a difference to me and my two boys. one has Autism/ADHD/ODD and PANDAS and the other ADHD, and then on top of that, my hubbie has ADHD, so it can be very hard sometimes. I came to realize some of their struggles really are commonplace, which I can't always see, because we don't know anybody else who's kid has autism or severe ADHD and especially not PANDAS. But your blog helped me realize that and take things in stride way more. Plus, seeing the way you hold Gavin responsible for his actions, despite his terrible meltdowns, made me realize I really need to do that much more with my own autistic kid (even if he has the meltdown from hell, now I feel we will be okay, especially after seeing a video of how similar and also how worse a meltdown can be).
Rob, you're a hero, and someone ought to step up and help you out more in some way, even if it means a local agency giving you free respite hours for your kids, so you can take a break. I don't know of anyone who tries harder with their autistic family, loves them more or is more giving.
Hi, Rob.
Please hang in there. I love reading your blog and because of it, I know that I personally have become more Autism Aware. I am proud to use midNIGHT ROM on my phone because every time I turn my phone on, it reminds me of you and your family and even the Bare Handed Man.
You are one of the most inspiring people I've ever "known" and it breaks my heart to watch your struggles. I can't possibly understand what it's like to be in your shoes as I've not known anyone with one, let alone more, special needs children. But the way you document your story by opening it to the world with your honesty… I can't see how people cannot be touched and learn from your experiences.
I wish I could help more at this time, but all I have to offer right now are my words and prayers.
Even if you touch just one person at a time, it helps make the world a little better place. You are doing that.
You know something. I really, truly appreciate that you said this. Sometimes it feels like I'm fighting a losing battle. Knowing that people are listening, learning and becoming Autism Aware gives me the strength to pick up and keep moving sometimes. Thank you so much for your support 🙂
Rob,
I read your blog every day; because of your ROM and this blog I am now more aware than I ever could have been regarding this insidious disease. I am continually amazed at all you accomplish and find myself wondering how in God's name you can do that on a daily basis.
You and your family are an inspiration, plain and simple. You really make the point of enjoying and embracing what you have and letting go of what you think maybe you deserve or should have, salient.
It is awful to hear that your family isn't as supportive as one would expect; you'd think they'd rally around your family.
Please know if there is anything I can do to assist I am willing. I am developer of web apps and desktop apps. Using .Net platform mostly, perhaps updating each site your ROM is available at. So it is less you have to worry about …. anything at all. I'm slowly delving into ROM dev, I hope to give assistance there as well some day.
Take care keep fighting the good fight!!!
I know that people are reading your blogs, and the word is spreading because of what you write. I know this because of how many people I've seen share your posts, and how I got here in the first place. I don't know how much impact you're having by the time it trickles down, but I don't think anyone can ever know that kind of thing.
If blogging helps release some of the pressure you're feeling than you should definitely keep it up. If it just seems like another chore than probably not.
But if you're feeling you need to make autism advocacy a job, so to speak, then maybe that's something that's better put off til later. For now, you can advocate by proxy with your blog entries, even by just leaving up the ones you've already written. Once things are under control there and you have some breathing room. You can always put more effort into the advocacy side of things, and you'll have all of this content to draw on.
I appreciate it. I just wish some of those closest to me were among those reading. I don't know if I'm looking to advocate or not. I just want to share my story let people know they aren't alone in their struggle. I'm just feeling overwhelmed and frustrated. Maybe a little helpless and hopeless. When you live through the things my family does it's hard at time to remains positive. Somehow we persevere. 😉