Butterfly grew up with food intolerances and was diagnosed with ADHD, Asperger's
Syndrome, and learning difficulties. Now she struggles with OCDs.
This is the story of how we have faced these challenges.

Tuesday, December 7, 2010

Respect: Rising to the Challenge

There’s dissention in the autism ranks. This could probably be said of any "group" of people, because there's always some people who think their challenges are just naturally more profound than the next person’s. Humans seem to have this bizarre need to categorize things and find the "typical" experience. But there is none. This can only be said so many ways: no two kids are alike; no two parents are the same. If you can't use the experiences of others, at least don't belittle them, because we have all had to deal with the shit life sometimes throws at us in our own way.

There’s a saying: “God never gives us more challenges than we can handle” or something like that. I think it’s crap. Some of us are indeed faced with more than we can reasonably handle and trying to overcome some challenges leaves us bent, ragged and broken, not exactly better for our struggles. But what can we do? Sure, we have free will, but there are only so many choices. We can opt out of any given situation, but if we abandon the people we love, how do we love, or even live with, ourselves? If we try our best, but fail, how do we cope with the guilt? If we don’t have the stuff to even really try, how do we deal with the shame?

Some people get really ticked off with me because of my incessant cheerfulness. I remember watching an interview once with a comedian who was often the very life of the party, but confessed that afterwards he went home and collapsed into a fetal position on his bed where he might remain for days, shut down by his crippling depression. I could relate. I am not lifted up on the gossamer wings of some magical griffin to be waving at others from aloft. I have dragged. myself. up. from. the. black. abyss. of. my. despair. by. my. own. sheer. stubborness. I have done it, time and time again. And not just because of raising an Aspie. I did it because somebody needed me. Whether my child, my aging mom, or others in my life, somebody needed me to keep trying. So I did.

Are there others with more profound challenges than I’ve had to face? No doubt. But what is, is, and I can only bumble along my own path and live my own tattered life. I’m not afraid of death either. Heh. I’m only afraid of hurting someone, by leaving before they’re done needing me. And so I do my best to stay as healthy as I can and be there for them. And yes, it has occurred to me that maybe, just maybe, if I’m not here to help so damned much, the people I love will get stronger. sooner. faster. better. But I don’t know that. So yes, I struggle onward, doing my best, and I do it as cheerfully as I can. If that pisses some people off, oh well.
It’s about respect. Are people struggling with kids at the profound end of the spectrum somehow more worthy of attention than parents of Aspies? C'mon. That's like saying it's ok that Joe and his family lost their home because they're still better off than that starving AIDS orphan in Africa. Neither is ok. It isn't a contest. Both need our compassion. Behaving as if it's some sort of competition only cheapens all our struggles. There is something about raising a child anywhere on the autism spectrum, or with other health or developmental challenges, that can bring any reasonable adult to their knees.

Even though we are journeying together, doesn't mean we are on the same journey.

We all just need a little more respect for each other. We just really do.

The challenges others face and the choices they make are their own. Some people really seem to WANT to be victims. Others can’t help feeling sorry for themselves. That doesn’t make it ok for the rest of us to judge them. We don’t know what else they’ve been through. What is, is. Writing about just some of my challenges has been a great catharsis for me. It brought my daughter (who has been reading along) and I closer together in our purpose and resolve. Once again, I do hope there’s something here that will somehow help others. Regardless, I will march on, and I will be just as cheerful as I can about it.


  1. I totally agree with you. I hate that "theory of relativity" that there is always someone that has it worse off than you. Of course there is! But that doesn't invalidate our own struggles. I don't want to be made to feel guilty about it if I'm going through a rough patch...that doesn't help me one bit.

    The autism community can be rough on each other sometimes. My feeling is that our nerve endings are just a little rawer and we can be overly sensitive and quick to lash out. I try to remember that as I'm responding to things out in the blogosphere, social networking, etc.

  2. Yep, and I think that's important for everyone to remember ~ that there are times, whether momentary or extended, that we're just at the end of our rope, and we really don't need anyone else jerking on it for their own edification. :) We all need to try to remember to keep a "let's help each other" attitude. Anything less doesn't cut it.

  3. Oh man, I think I might have said something that was misunderstood, and for that I apologize profusely. Katie is super HF, so sometimes I feel bad having a rough day knowing there are others far worse off, and that they look at me as though I shouldn't ever complain. I think I go beyond what I need to try and make them feel better and almost apologize for having a HF kid. I have completely been at the end of my rope many times, and I think each part of the spectrum comes with it's own challenges, none more worthy than another, but I still can't help feeling almost guilty sometimes. If anything I said came out wrong, I'm sorry. The internet world can be hard, sometimes. We all do have our own journey and we are all entitled to our feelings, and I never mean to make anyone feel otherwise.

  4. It wasn't you, Jen. :) Relax. I feel just as you do. Our little conversation was going great until.. Anyway, that's 2 apologies for 1 intrusion, which is 1 too many. ;o) I don't very often get ticked off, but I've written the above blog post, and repeated, repeated, repeated so often that it's not a contest, and still along comes somebody who apparently resents me celebrating the progress and beauty of my child. The end of my rope was right in that moment. Wasn't you tho. :)

  5. OH, OK...ha...good. I was all worried!!!!