Guilt is my Muse tonight

Look, I haven’t written one of these posts in awhile but I’m feeling inspired.  Unfortunately, guilt is my muse tonight and deservingly so.

Elliott is so disagreeable anymore.  If we ask him to do anything, literally anything, he just melts down.  I don’t believe that he’s trying to be difficult.  You can see it in his eyes.  He’s completely overwhelmed and doesn’t know what else to do.

We’re working so hard to provide the boys with as much stability as humanly possible and then some. 

However,  life becomes very difficult with this type of problem because we can’t do anything without setting him off.  At least that’s how it feels. 

We try to give him as much control over his life as possible because so much of his life is out of his control. It breaks my heart to see him struggle with life like this. 

Maybe we waited too long to remove Gavin from the house? I know we waited too long and that’s my fault because I tried so hard to keep my family together. I think I may have thought it was the right thing to do at the time. Clearly,that was the wrong decision and I deeply regret the impact my mistake has had on the lives of the rest of my family, more specifically, Elliott. 

You know, there’s no instructions that come along with parenting, let alone special needs parenting. 

I always do what I feel in my heart is the right thing to do.  Many times, the right thing to do is not obvious and all you can do is what you think is right at the time, with the information you have available to you….. It’s like trying to answer a multiple choice question, where you get very little information to go on and have to pick the best answer out of four,  when all four answers are correct. One is just more correct.  Anyone that has done anything in the medical field and take. A National Registry test, knows exactly what I’m talking about. 

Unfortunately, many times I find that in hindsight, I have made the wrong decision, even though my intentions were honorable. 

The are so many areas in special needs parenting that are so murky, they don’t even qualify as grey areas. To make matters even worse, there are people lined up, seemingly waiting to criticize every mistake made, like they could do better themselves. 

It’s easy to armchair quarterback because you have nothing invested and feel no sense of urgency.  Plus, you have the benefit of knowing the outcome before you make the decision. 

I’m thankful that for the most part, we don’t have to deal with too much of that crap in real life. 

I’d like to give a hug to all of you out there facing this type of ridicule and I’d love to give a firm Agent Gibbs smack to the back of the head of those dishing out the ridicule.  That’s an NCIS reference, for those wondering.  🙂

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rmagliozzi

So many of us go through this too. Autism is so vast it can cause a huge variety of medical and psychological problems, depending on the cause. With my oldest son with autism and PANDAS, he presents very similar to Elliot: high anxiety, OCD about food and other things, and defiance rooted in anxiety (the anxiety causes him to melt down, which seems to be defiance).

Paradigm

I just want you to know that you are not alone.  Because my family members all have high-functioning Asperger’s, and we do not deal with the type of issues that you do with Gavin, I feel like, maybe, I don’t have the right to tell you anything.  But, I will try anyway.  I want you to remember that you face, on a daily basis, Mt. Everest in your life. Even dealing with one family member with chronic health issues, an acute crisis, a mental/emotional issue (chronic or acute), let alone any one person with a disability…just one disability times one person can be exhausting for the caregiver…even when we love them.  My God, Rob, just thinking about what you do daily exhausts me.  Multiply what you deal with, considering every single person in your home/life, times multiple issues, times your own medical issues….honestly, it is hard to look straight at it…I mentally have to glance at it from the corner of my eye.  The choices you have to make…they are heart-rending.  I have three children myself, two Aspie girls and a NT boy (and an Aspie spouse who also has many medical issues). There are times that, to meet the needs of one, I literally have to suffer terrible guilt for neglecting the needs of the others. I have to actually make the choice of who to help.  What parent ever wants to have to CHOOSE?  It is like those stories from the tsunamis…a parent has two children…all three are drowning…but if the parent gives up one, the other child might make it…who could make that choice and remain sane?? Although the situation and individuals are different, I can barely tolerate the guilt that constantly swirls around me.  I just came through a time of terrible depression.  Each small task or decision was overwhelming.  Each day was a quagmire of guilt and frustration over the smallest things. The indecision paralyzed me.  Now that I have climbed out of the pit, I can easily accomlish a lengthy list of tasks and errands in mere hours…and feel energized.  Nothing feels overwhelming.  I feel clean and free.  All the same challenges are present, but I FEEL better.  I feel like I am in control of the chaos, rather than the chaos controlling me.  I hope that, some day, you will feel that as well.  I just want you to know that I can appreciate your struggle.  I see you climb Mt. EVerest each day.  You may know full well that you will never reach the top…but that hasn’t stopped you from getting up and starting over again each day.  That COUNTS, my friend, that COUNTS.  It is never the victory that really matters…that is just the end of the race.  What matters is how you run it.

lostandtired

@Paradigm thank you so much for what you said, and for taking the time to write that. I really, truly appreciate it. I’m always here if you need something. If you need anything, please don’t hesitate to ask. You and your family are in my thoughts and prayers. 🙂

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