Don’t tell me

Let me say up front that I know I’ve been rather negative around here recently.  First of all, as I’ve said before and I’ll say again, I’m not known for my optimism.  This isn’t to say that I don’t try to be positive and try to remind myself to be positive… in fact, last night I was grasping at straws trying to drum up a positive post on here… but the fact is that I am where I am right now, and you’re along for the ride.  If you want to read a more positive post on a more positive blog, I won’t hold it against you.  Now, don’t say I didn’t warn you.

Sometimes I think that autism is like trying to stop up one hole in the dam and another one starts leaking.  Get the self-injurious behaviors to a minimum and the speech checks out.  Work on that, and the world becomes a sensory nightmare.  Oh, and those holes break open in cycles, too.  So every time something crops up with a problem, it’s a place I’ve been before and will likely be again.

Then sometimes, like tonight, the flood gates open, and it all breaks loose.

Try as I might to be positive, I get tired of autism.  Tired of it.  I’m weary to the bone.  Think about your job, your husband or wife, your kids, your pets, your car and ability to drive it, your going shopping, going to a movie, having coffee with friends, going on vacation, talking to your family out loud at will… autism has stolen all of it from me.  I mourn what I’ll never have.

I tell myself I don’t want these things.  That I’m happy with my couple of life-and-blood friends, that I don’t have anything to offer the work world, that I don’t want to be in a relationship or have kids (that last one, I’m still sitting on “I don’t want” and not “I can’t have” because that one just hurts too much).

But, hey, secret?  Sometimes, I do.  Sometimes I feel lonely in this apartment, and sometimes I want more than my cat and dreams of my dog to keep me company.  I don’t like being on SSI… I know that I have something to offer people, and I’m determined to use my voice and my typing to reach people.  I will.  Just you wait.  I never did like driving, but the ability to go somewhere and do something, I dearly miss… I guess you could say that I miss the concept of driving, the independence it offers.

My life may be a series of regressions since goodness-knows-when, but I’m still in here.  I’m still the super-smart, funny, hard-working, stubborn girl I used to be.  I may walk away when you talk to me, and I may end conversations with a sudden “bye” and hang up, and I may close my eyes tight and hold my ears in the middle of bible study… I may not seem present at all… but I want to be, so badly.

I don’t know where to go with this.  I’m angry, frustrated and confused.  The only thing I know to do is to repeat what I know is true.

I am who I am and God made me this way.

I am beautiful, and smart, and funny, and loyal, and a good friend, and honest…

I am not broken.

I am not less.

I am not diseased.

I am autistic.  Autism brings a lot of bad, but it also brings a lot of good.

If I weren’t autistic, I wouldn’t be me… and me is a good person to be.

I can do good in this autism world.  I can make a difference.


And I will.



5 thoughts on “Don’t tell me

  1. Awww Lydia, I wish I could do something for you. I know how it is when things are going as they go. You are not alone, I hope you know that, somewhere deep down. Prayers and hugs,
    Mrs. E.

  2. Actually that was a positive post, the ending sounded really nice. I used to think other people were happier than I, but believe me underneath everyone hides their unhappiness :). I hope you will have a baby and family of your own, show the world autism has’nt made you any lesser. I have a son on the spectrum he is 3 year old.

  3. You are an EXCELLENT, nuanced writer. You are making a difference here, I can tell. I know that feeling of being overwhelmed by my senses (NVLD) but probably not to the extent that you or my son do. You may always feel some of the first part of what you wrote, but if you hold onto what you said in the last part and carry it like a mantra, I believe it may carry you through.

  4. This is the first time that I’ve found your blog and I love this post. It is totally normal to have days like this…and I think you said it all beautifully. Hang in there, things will get better!

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