A LITTLE WHINE WITH DINNER
The Struggles. When my children were toddlers, the days were challenging. There were years that doing something as simple as buying groceries was impossible without help and not just because of having a child with special needs. I had three little ones that all needed to be in the grocery cart but not close enough to each other to engage in battle. Every day was completely exhausting.
The ensuing years were tiring and hectic because of the kids ending up at different schools at different times with all kinds of school and after school activities, IEP meetings, etc. Now, they are all grown and life should be all settled and better, right?
Well, it’s not. And THAT is because of an adult child with special needs. What really sucks with autism is the reality of the struggles that will never end.
Whoops! Is that me? Complaining? Surely not, because I am so strong and tough, such a fighter. I am so patient and never lose my cool.
I am proud and not hesitant to say that I am a wonderful advocate for Jess.
But, then there is just me: jobs, errands to run, bills to pay, forms to fill out, time-sheets to approve, two budgets to manage, mail to open, insurance bullshit, being a caregiver to Jess, putting food on the table, doing laundry, cleaning house, etc.
There is a car in my garage that has had a dead battery for more than 6 months. There are two recalls that I need to address by taking it and leaving it with the dealership.
My bedroom is in a finished basement. Naturally, that includes the occasional bugs and spiders. There is a corner that has a spiderweb in it with dead bugs littering the floor underneath. I think even the spider is dead now which is why it doesn’t bother me much to just keep leaving it there. I try to avoid looking in that corner.
I can do each of those things I mentioned. So, why the struggles? TIME. Those things all take TIME, and more than I have. There will never be enough hours in the day to do all the things that need to be done. So yes, sometimes I complain. It is very frustrating. I want to get all the things done that need to be done. Being organized, neat and efficient is my dream.
With a shortage of time, I must prioritize to get the things done that have to be done. That is why there are dead bugs and spiders in my room and why there is a car sitting in my garage for going on a year.
However, even with prioritizing, it can be extremely challenging to manage all of the top priorities. One of those priorities is managing Jessica’s waiver budget, which is my responsibility since we chose to self-direct all of her services after all of our other attempts at services failed.
THE TIME COMMITMENT AND CONFUSION OF SELF-DIRECTING
Let me be the first to admit that self-directing is confusing and more time-consuming than I expected. A major learning curve was built in since there is no organized instruction about how to go about self-directing. There are guidelines that explain you are responsible for this, that, and the other, but not how to do this, that, and the other. Files, forms, and documentation have to be kept. Pre-designed forms or methods of documentation are not included in the packet or instructions. I had to create my own, all while not having a clue about what I was doing. (Since I originally wrote this post, some organized instructions and workshops have been developed in our state.)
I have been self-directing for almost two years and I just got an explanation this past week of how the budget is incrementally pulled into her account via the financial company that manages the payroll, tax forms, etc. Had I known how that worked, then I might have been able to better understand the bottom line of the monthly statements that were really only sent out quarterly. They are supposed to come monthly so that I can be aware of the balance of the budget. But, I didn’t know they were supposed to come monthly.
Confused? Me too.
Cycles of contemplating throughout multiple days and nights: How am I going to make it work? How can I simplify? When will I figure out the strategy to get it all done?
It is not possible. Those are the kinds of struggles that will never end. I literally cannot get it all done on my own. I am more tired than I used to be.
Each time I go through one of these cycles, what I eventually remember is that frequent re-evaluations of priorities and philosophies are a must. Things I factor in include:
- Finding simple things in life to enjoy – then making time for those things, for those are the payoffs. Those are what makes the struggles worth fighting through and what recharges my own battery. For me, those include spending time with family, my garden, and traveling.
- Making enough money to pay the bills – but not trying to make enough to have extras. A new wardrobe can wait. New shoes can wait.
- Finding time to pay the bills – something I must not procrastinate doing! A clean house can wait. That spider in my room can wait. Even jumping off the car in my garage can wait.
- Finding time to manage Jessica’s budget – without it, we lose.
I go through those steps and feel better for a while. Then, that damn cycle happens again: Because, even though my autistic child is grown, many of those struggles will never end. Because, sometimes it is just hard to settle for status quo. Sometimes, it’s just innate to strive for more and want to get ahead.
Btw – I have a good life
(Just so you know, really, when I’m not whining, I consider every day a win. I know I shouldn’t complain – I have a good life and am very lucky. Every day.)
I think complaining, in your case, is a valve release…a necessary valve release! You aren’t shying away from your problems, your just observing that life is difficult…and you have managed to tinge it w/humor. You have been fighting this battle, for I have every idea it is a battle, for a really long time…I absolutely respect your perserverance. You are amazing!
Thanks Diane, I appreciate your sweet comments! I guess I’m not used to releasing this valve so publicly 🙂 However, I don’t think it would be fair to others in similar situations to not represent the struggles honestly. Thanks for your encouragement!
Val and Jayne, you are both rock stars and even rock stars get to complain when life gets crazy. Our waiver system is way more complicated and confusing than it needs to be. My son also self directs a portion of his services and, believe me, I feel your pain.
Thank you Inez! I sure don’t feel like a rock star. (I just feel tired LOL.) For so long, I didn’t myself view our circumstance as a hardship, just our way of life. Now, it is a hardship I guess. I thought the waiver was going to be the answer. It is a great help, and Jess is getting out of the house, occupied, and happier. But the process is so much more complicated and time consuming than I anticipated.
Thank you for your kind words and support! We miss you!
Lordy, sister…I feel you. I found that even the starting paperwork was intimidating enough to make me determined to find SOMEWHERE so I wouldn’t have to do self-directed with our waiver. Gahhhh…
Yes, I’m also having too many of those days these days. And, yes, I have a good life too, but the stress can make me wonder if we’ll ever not be consumed by it all. Damn the spiders…and the piles of crap everywhere…this is real life. ?
Jayne! THANKS! for making me feel better about allowing myself to ‘complain’!! I think for strong people like you and I, sometimes it is extra challenging to put those weaknesses out there for everyone to see. I think I would happily revert back to plain ole IEP meetings and basically have paperwork handled for the year. Currently, things do seem so much more complicated. But, maybe in a few years we’ll go back to being pros again 🙂