As a special needs parent there many many things I worry about. I thought I would share with everyone just a few of the things that are weighting pretty heavy right now. This isn’t meant to garner sympathy but to share some more about my family’s situation.
I truly believe there is no way for me to win this battle in the long run. By “win” I mean making sure everyone’s needs are met and my family survives one more day. By “battle” I mean the constant struggle for survival. By “survival” I mean meet my family’s physical, emotional, medical and even financial needs. Here’s the reality of our situation. Lizze is sick and getting worse. The worse she gets the more responsibility falls onto my shoulders. I worry constantly about her and have little choice but to stand by and watch her suffer as there is nothing much I can do. With all she has going on she simply isn’t capable of sharing much of the responsibility of this family and it’s not her fault. I know she wishes it could be different and is giving me all she has. The reality is that what she has left isn’t even close to being enough. It’s overwhelming for me to say the very least and frustrating for her.
Gavin is continuing to decompensate and the meds just don’t seem to be cutting it. Truthfully, I don’t know what the right thing to do for him is. His behaviors are exhausting for me. It’s not like he’s out of control right now but he just can’t seem to think for himself. He has VERY little common sense so I’m always having to remind him of the things that come naturally to most. That’s not meant to be a put down either, it’s just the way it is. Emmett is just out of control most of the time. He literally requires 110% of my attention 110% of the time. I need to constantly keep him from hurting himself or someone else. I need to be spending my days teaching him ASL and working on other skills so he can move forward. We got him into this study at Case Western but that requires tremendous sacrifice in order to participate. It’s an additional $100 -$150/per month JUST for the fuel alone. Honestly, I’m not sure how long I can make this work. Exactly how do you put a price on your child’s future? Elliott is in desperate need of more attention from me. He is SO anxious ALL the time. I need to spend more one on one time with him. I’m not sure where I’m supposed to find the time? I have to make that a priority.
The problems is that EVERYONE is the priority and when everyone is the priority NO ONE gets what they need. I’m in a position right now where I just can’t keep this up. I’m getting headaches everyday now and my stress level is through the roof. Not only do I have to take care of everyone but I also have to try and bring money in. When I had to quit my career and become a stay at home dad I knew it wasn’t going to be easy. I always made things work. I fixed computers out of my house to make ends meet. However, as Lizze gets worse I end up having to just keep doing more with the same 24 hours in the day that weren’t enough to start with. I have tried really hard but it just simply isn’t possible for me to squeeze anymore time out of the day. How am I supposed to get anything done when each on my kids requires 24 hours a day of my attention? If you’re sitting at home doing the math right now your saying to yourself “how can you give 72 hours worth of attention when you only have 24 hours to work with?” That is my struggle right now. The simple answer is that I can’t do it. I have to prioritize as much as possible. How am I supposed to choose between my kids? Should I ignore Gavin’s fear (do to his hallucinations) and instead focus on Elliott who crying because he’s just so overwhelmed with everything he doesn’t know what to do? Maybe I should just let Lizze get assaulted by Emmett and instead stop Gavin from self-injuring? How about I ignore everyone and focus on bringing in the desperately needed money we need to survive? Because that’s what it would require me to do. What about the house that’s falling apart around us? How am I supposed to find the time to address those problems? Do we draw straws? Maybe play paper, rock, scissors to see who or what get’s the little time and energy I have left to give? There’s no easy, let alone right answer to this never ending question and not to sound like a selfish a$$hole, but what about me? I’m so over worked and stressed out right now that I know it’s just a matter of time until my body fails. I’m not coping well because there’s not enough of me left to do that. I have to many responsibilities and not enough of me to go around. How am I supposed to provide for my family both physically and emotionally if I’m broken? Let’s be honest though I’m not doing that great of a job now anyways, right. I can’t pay the bills because there’s no time or energy left at the end of each day to do anything but collapse. I can’t meet my family’s emotional needs because I get ping ponged back and forth between everyone just putting out the fires. No one in this house is getting enough from me and I know that. I try to figure out ways to stretch myself even further but it doesn’t work. The only thing I have left to do is just start cutting things out of our lives that aren’t ABSOLUTELY ESSENTIAL to survival. We’re already running pretty lean so to speak. I’m not sure what, if anything, is still left and needing to be cut out.. There is really no right way to prioritize everyone’s needs because they are ALL EXTREMELY important to their individual survival. This is the part of my life I rarely speak of because it shows just how poorly I’m taking care of my family. This is my family and my responsibility. I gladly take on that responsibility it’s just not easy. Honestly, I don’t even know if it’s possible.
When your a special needs parent you don’t have the luxury of anything, really. Life is hard and full of sacrifice but you do it willingly and as many times as it’s necessary for your family to survive. I just want people to have a better understanding of some of the challenges I face every day as a special needs parent. While my personal situation my be an extreme example there are SO MANY families out there that are going through something similar in their own way. Please remember them in your thoughts and prayers. While your at it please say a prayer for my family as well. Please pray that I figure something out….
-lost and tired
Thanks everyone. I really appreciate the support. I mean that…. 🙂
Incredible piece, brought a tear to my eye. K0nane's comment says it all really. I echo that completely.
(just like an android user to use someone else's stuff and say yeah that is good, I did give proper credit though)
Rob, i love how you lay it out there. You have the weight of the world on your shoulders and yet have the time and selflessness to reach out to others. Amazing is all i have to say. One of these days i sure hope that you find the ray of hope that makes it worth while, you and your family deserves that. Hang in there and just keep plugging away.
I don't have much to say because I honestly don't know what /to/ say. I couldn't possibly understand what you're going through, and to pretend I could would be insulting. All I can say is that to do what you do takes an incredible amount of strength, and that the incredible dedication you have to your family, the time you put in, and all of the selflessness that must take is truly admirable. Many parents may well have given up by now, but you haven't. I, as an outsider, believe you're an hero amongst special needs parents and parents in general all across the world.
I hope you find a solution to your problems. I'm sure you already have quite a support network, but if there are any professional resources available beyond those you already utilize I hope (once again, as an outsider) you won't hesitate to make use of them. Any small thing…
Thank you once again for your contributions to the Android community – and hang in there. All of us at XDA and beyond are behind you.