The perils of being undiagnosed.

The main reason “O” and I have lived our lives so long without a diagnosis is because we’ve both been able to “get by” but that’s getting harder. From what I’ve read a lot of us don’t realize where the real difficulties arise until we pursue a dream or have kids. For “O” and I, having to consistently provide not only for ourselves but 2 kids is beginning to make just how not “normal” we really are. 

For me it’s the constant assault on my senses and the difficulty in understanding what my college assignments are asking of me. For “O” it’s finding the balance between needing to be precise/honest and efficient on the job. 

I failed an embarrassing amount of classes when I attended a traditional college, not because I didn’t understand the material (except for math– I can’t do math) but because I did what my friend(s) did, which at the time was skip class and go to the beach. In retrospect I can see how that didn’t make any sense, I wasn’t particularly fond of that group of friends, I actually enjoyed class and the beach was difficult for me in a variety of ways… I usually ended up with a migraine afterwards. It was never a “big deal” though, I couldn’t see how it would affect my future and as independent as I thought I was (I wasn’t) I always had my mom to fall back on. 

Now I’m back in school but due to “K’s” needs, I have to attend school online. I like that I can go at my own pace and it’s more interesting that just taking a midterm and final (there is actual work involved) I am having trouble. One of the biggest issues I’m having is that, at least for this last class I took, the terms are not consistent. For instance the chapter will be about the different perspectives in psychology about motivation but the assignment will ask that you refer to the different models of motivation. It seems simple enough but for whatever reason, even if I’ve read the chapter twice and no that it doesn’t use the term models I will still look for it. I waste time and get confused and overwhelmed, then depressed because I’ve always considered myself an intelligent person and I get upset that I have difficulty with something so simple. This could be easily solved by sending an email to the professor but that involves it’s own issues. Anxiety sucks. 

For “O”, he is dealing with the reality of our culture; faster is better. He is technician for a popular telecom company, he is still considered a “new” employee because training was 3 months long, he’s only been out on the field for 2 months. The other issue is that we both ( I guess because of being on spectrum) don’t really understand the accepted practice of saying one thing in training for appearances but really meaning something else. The technicians are taught that the must be thorough and customer service is number one but when they get to their areas their supervisors demand efficiency above all else.  “O” takes longer to perform each call because he is practicing what he learned in training and because he’s doing his job but the numbers don’t reflect that effort and he’s being reprimanded for it. He called me today and he’s very upset about it and wants to quit. He can’t. I hate to hear him miserable but we have home to care for and children. My mother already helps more than anyone should have to help their adult child with children of her own.

I sometimes regret having my son, not because I don’t love him or don’t him, I do. It is because I feel that I have limited him in some ways and made life harder for my supports (mainly my mother). I am an extremely capable person but at the same time I’m not. I worry about being able to effectively provide for him and  my stepdaughter. I worry about “O” and being able to keep jobs, maintain our lives and give the kids the best life possible. 

Most of all I worry about “K”. I know it’s impossible to tell the future of someone on spectrum when they are young but I feel in my heart that she will always need round the clock support. What if we can’t provide that? What if we try to be completely independent and crash and burn? 

I’ve always wanted more children but I realize now that I probably shouldn’t have anymore. We likely survive when my mother is longer their to help us but there is a difference between surviving and thriving. My children right now are thriving but if I were to add another, I don’t know that would remain true. 

Can’t I just win the lotto? Then I could hire someone to help and money wouldn’t be an issue… oh to dream. 

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6 thoughts on “The perils of being undiagnosed.

  1. So very true. The demands on our functioning at a certain “normal” level increase as we get older. I find that I’m not capable of keeping up with demands anymore. And the resulting judgment from others seems harsher as well…

      • Yep. Very true.

        And the other side of the coin is that when your particular needs and moments of distress are in full view, then you are automatically labeled as low-functioning. Because high-functioning people are not supposed to act that way. Which carries its own dangers, like being treated like a child.

      • Yes! My cousin is faced with this all the time. He needs the most support out of anyone in our family but in many ways he’s more put together than any of us. He’s younger than me already has a degree and career. He gets talked down to by many of our NT family members, they treat him like a child and he gets very frustrated. He has a very young appearance and difficulty speaking because of low muscle down in his jaw but he’s more successful than a lot of people I know.

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