Thursday, June 4, 2009

Catching Up

How I Got Here
I grew up with a lot of frustration and misunderstanding. I was a tantrum-ing, has-to-be-my-way, zero-to-sixty kind of kid. Academically, I did extremely well and was in the gifted program by the end of kindergarten, so no one really looked into the issues I did have. School reports say that I would only do what I wanted to do, when I wanted to do it; refused to work to my potential; lazy, forgetful, disorganized, inattentive. I had been diagnosed with depression, anxiety, and OCD and ADD (minus the H) were mentioned, but no one was quite sure what the problem was. I was annoyed, because I knew that I wasn't depressed. I didn't know how to tell anyone what was wrong, so it came out as shutting down or melting down and being angry with my family for not understanding.

Finally, at 20, I was diagnosed with Asperger's. Recently, that was changed to Autistic
Disorder. Whether or not I had a language delay is up for debate, because while my mother insists "you were completely normal," looking at old home videos, I most certainly was not. Aside from some echolalia, I did not speak (at 2 and 4 years old).

Where I Am
I am living at home with my parents, trying to get my feet on the ground. It's a struggle for me to do the basic things I need to do to get by, like taking my medications and remembering appointments. My mom is helping me a lot. Health insurance is the Big Thing right now. I am, as of the other day, off my father's plan and have to fend for myself. Right now, there is no way that I could manage a full time job. Heck, right now, I can't FIND a job! I can stay on COBRA, but it's really expensive, and without a job, that's pretty tough. My mom will pay if she has to, but I'd hate that. We're all hoping that I can stay on my mom's insurance through a waiver that allows a "disabled" (hate that word!) adult to stay on the parent's insurance. That would be ideal. In the mean time, I continue to desperately search for a job that is 1) very close, as I lost my license due to seizures therefore needing rides, and 2) something I can manage (i.e., grocery stores, most restaraunts are completely out because I would be overloaded and overwhelmed).

Where I'm Going
In the next few months, I hope to find a job and get used to working 20-25 hours a week. I hope to get my psych meds corrected, so that I'm not such an anxious, frustrated mess. I hope to get OFF Klonopin, which calms me down but makes me "act autistic." I'm always right on the edge of keeping it together, so... I hope that I can.


  1. oh, darlin .. it does not sound like you've had an easy go of it.

    it sounds like aside from the possibility of a little revisionist history (of which we are certainly all guilty at times!) your mom is a great support. no doubt you can work through the issues that you mentioned with her help.

    ok, so this may be absurd (or at the very least ridiculously pushy) as i now know approximately 4 things about you (i snuck a peek at your profile, so maybe 6) but what about looking for work at a local bookstore? usually quiet, fairly predictable environment that would well suit your love of reading .. hmm, just a thought! there's one near us that even has a pet cat!

    anyway, keep up the writing. i look forward to 'getting to know' you.

  2. "Right on the edge of keeping it together" yeah thats about how I feel just about every minute of my life.
    I suggest local autism support groups if you have any, I have found them immensely helpful to me at different stages of my life.
    Good luck :)
    I can't do the job thing due to sensory and other health issues so I admire you for trying.

  3. I just want to cheer you on outloud as you face any adversity and have the courage to share it to benefit others plowing through autism to find God's will for their life. You go girl and tell us all about it! It strengthens my faith to hear yours.

  4. Lydia,
    So happy to find you (through Jess' blog). You are blessed as is your name. As to "Where You're Going", my mother has a favorite quote:

    “And I said to the man who stood at the gate of the year: Give me a light that I may tread safely into the unknown. And he replied; Go into the darkness and put your hand into the hand of God. That shall be to you better than light and safer than a known way.”

  5. Hi Lydia, this is the first time I am reading your blog. Do you live in PA still? With a spectrum diagnosis, you qualify for medical assistance regardless of income or living with your parents. Medical assistance is a state run health insurance program, which isn't nearly as good as private insurance, but it costs very little, and helps as a back up to your private insurance if you can keep that. If you need more information, respond to me here and I will get some more details. I am off to read the rest of your blog now. I have three special needs kids, two of which I gave birth to and also have spectrum diagnoses. We live in southeast PA. Good luck with your book! - Silk