Monthly Archives: September 2014

The Autism Community: Good, Bad, Ugly, and Shut Up.

For those of you new to the page, I owe you an apology. You’ve have entered our world, this online journey at a tumultuous time. You missed the potty training days, the time I sipped piss from a cup my child had peed in (thought it was apple juice), when Liam was a pirate, ran naked in a cape most of the day. You missed the fight for services, the humor along the way.

Lately, I am at a standstill with this community (not the page, but the community as a whole), and I struggle to cope with the dissension, the arguing, pretentiousness, self righteousness, and turmoil that rears it’s ugly head in a group of people who should be supporting one another.

I struggle to write. I think, “Maybe today is the day I write the post. Maybe today is the day I ring the bell, and invite every troll in the Western Hemisphere over for a cup of coffee.” My give a shit is long since been gone, and as much as I want to be a positive light– it has to be an honest reflection of this life– life with autism.

We’ve all heard the phrase your autism is your autism, your child’s autism is not my child’s. I’m not sure if some people understand how far that statement reaches. I’m not sure it resonates. The harsh judgements of others, the jokes, and criticisms of fellow parents tells me not everyone understands that autism is a spectrum, and where a child or person falls on that spectrum impacts the decision making and choices for that child’s care, the whole family, mental health, the outlook, and the level of support.

It is easy for some to say, “I embrace my child’s autism. I would not change my child.” And, for others, they simple can not wrap their minds around such logic. As an adult on the spectrum, I can tell you there are days I wish it would go away. There are days I wish I did not have the challenges I have. The thing is, in comparison, and I hate to compare, my struggles could be considered especially mild to so many others. Still, on any given day, to me they’re paramount, and I would give anything to be out of my own head, to be free from anxiety, worry, confusion, obsessiveness, depression, and feeling lost. Having said that, there are days, I feel none of those things, and embrace myself, completely.

I will never understand the wars we wage with one another. Change comes from within. Change. Comes. From. Within. You don’t like Autism Speaks? Do something. And, I don’t mean stand on their front lawn, or knock endlessly on their door screaming about it. You change the infrastructure, you become actively involved in the organization, and help promote an image and dialogue that better suits the community. I use Autism Speaks as an example because its always a hot topic, and it never ceases to amaze me. There are plenty who point and laugh, bitch and moan, but few who move on an action to promote real change.

If this page continues as an autism page, and make no mistake, I am NOT going anywhere, but have entertained a direction change, I have to write exactly what I’m thinking. Yes, the Liam stuff is cute. Yes, he amazes me everyday, and I am proud to be his mother. I am a purposeful person. I have to feel like I am representing our truth, and offering more than just another page about a cute kid. There are lots of cute kids.

Ghandi said be the change. Change to me is promoting productive conversations about issues that matter, not losing our voice fighting amongst ourselves, or using language to berate fellow parents.

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A Rambling Note to the Lot of You

Maybe I should talk more about the dark side, the hard parts, the struggle…

I make light of a lot. Partly because I look for the humor, partly out of fear. The truth is like the rest of you, except for the few palm readers we keep around for good measure, I have no clue what the future holds for myself, for my son. In the back of my mind, I’m always thinking about the hard stuff– growing up, independence, adulthood, puberty, relationships, jobs. It’s all swimming around back there. I could white knuckle the steering wheel everyday, waiting, anticipating, worrying. What if it gets bad again? What if it’s worse than before? What if he’s 6’4, and I can’t manage him? I could spend my life there– worrying.

I remember days where my thoughts swirled around one central theme, “I can’t. I can’t do this forever. Will it always be this way? Will he never understand? Is this the rest of his life? My life? Is this autism?”

There were a lot of tears, tantrums (his and mine), sleepless nights, and I just wanted it to go away– whatever it was… Maybe it was autism. Maybe it was the not knowing, the heartbreak, the sadness. I still don’t know what IT was, but I do know IT ruled my days for a long time.

Slowly, I began to reclaim little parts of myself, the truth I knew before autism. What truth? There’s no guarantee I will see my son grown. Any number of things could happen at any given time. To spend my life worrying about things that may never come to pass is a waste of precious time.

I remembered the mother I wanted to be, and while I gave up some of the small battles I thought I would wage– being fully clothed ALL the time, licking the ground, touching garbage cans, you know, shit like that– I remembered the big things I wanted for my child– to be content, comfortable in his skin, happy with himself. While autism presents challenges, those dreams are still present.

I suppose I don’t write about the dark side because I figure you already know about it. Why take you there? I’m certainly not the only parent who has these thoughts. It’s a second job for all of us. Reading some of the comments today broke my heart, made me grateful. I wanted to sit next to you, share that cup of coffee or tea or wine or bourbon in silence, and just exchange energy…

Much love to you all in this rambling note….

X

Bec

Ten Things to Remember

Some days I wish I could go back to when Liam was a baby. Start over, knowing what I know now. We should really get one do over.

That Mr. Potato Head picture….. It was before I knew he was autistic. It was before I knew how serious it all was, how it would impact everything…I didn’t know what I was doing. I knew there was something happening to him, to us. I didn’t know what. I thought it could be autism. But, so many doctor’s told me it wasn’t. “Absolutely not,” they’d say. They were saying absolutely not until three months before he was officially diagnosed.

A Couple of Lessons I’ve Learned Along the Way:

1. Doctors, are humans, and while they spend years in medical school and practicing, they don’t know everything. Follow your gut. Trust your instincts. Learn the difference between recommendations, and THIS is what we have to do.

2. Interventions are meant to be tailored. Don’t buy into the yay and nay. Research and try things for yourself.

3. Learn to laugh. You’re going to need a sense of humor.

4. Dark times will come. I haven’t met a parent yet who hasn’t experienced it. Some of us will have darker times than others. Lot’s of things are involved in that. Each person’s experiences are different, and so are their responses.

5. It will never be perfect. It won’t be. Your best has to be good enough. And, some days? Your best will feel like your worst. What do I mean? Some days it may be all you can do to put one foot in front of the other. But, when you make it to the end of that day, know you took every step. You may not have been running like days before, but you did your best.

6. Find something for yourself. Something that brings you joy…that helps refocus your spirit.

7. Don’t get lost in the future. Seriously? How many times do things turn out the way you imagine? Yet, it’s so easy to become fixated on the unknown, planning for situations, and worst case scenarios.

8. Take breaks from autism. Even though you can’t take breaks from your child, take breaks from the research, the hours of online madness. Take time to be where you are, where they are, and then when you’re energy is back– dive back in.

9. Find one friend you can spill everything too– the good, the bad, and the ugly. If you can’t find a friend– start a blog. (BA ha ha ha ha)

10. Breathe– deep, cleansing breathes, and keep pushing.

A Random Blip About My Early Years— The Couch Routine.

I didn’t know why I had to be wrapped so tight in that blanket. It was an insatiable need to feel comfort, to be surrounded by something, and it had to be perfect. The pillows, the exact comforter, the perfect spot on the couch—it was time consuming, and the need was overwhelming. Eventually, I’d get it right. I’d have a brief moment of contentment, and within moments this horrible feeling of discomfort and desperation would overwhelm me. I had to move. All the work, exactness, and time was for a few, short minutes, sometimes seconds, of pleasure, and then it would be over. I would be off on my adventure. I spent my early years sensory seeking. Arms extended behind my back as I ran to and fro. I looked typical in a lot of ways. I spoke. I played. I interacted. I was shy. I was on the autism spectrum.