The Clouds of April.

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The clouds have been more than intermittent.  Some days, I can’t see the sun at all.  It rains off and on.  The windshield on my car is dirty and full of spots that obscure my vision.  I can’t wash them off with a spray of washer fluid because that is broken on my car.  So when I try to wash away the dirt, it smears, and I hear that scraping sound that sends chills down my spine like fingers on a chalkboard.  One minute I’m freezing.  The next it’s hot.

With the humidity from the spring rains, the car smells like urine.  Yes, you read that right. That’s what happens when there is a seizure.  I’ve scrubbed the floor but the smell has not gone away.  It’s okay when it’s not stuffy outside or hot.  But when it’s either of those, which is most of the time these days, then I’m treated to a reminder about differences.

Our fairly new senior tutor announced that she believes she’s mastered compliance with my son, this week.  This means she believes he is listening to her instructions. She offered to try to generalize this feat in different environments.  Ride around with us on errands to check that he listens to her other than in the environment he’s used to “complying” in.  I put her off it, saying we had no errands to run.  The reality is that I don’t want her in my car, smelling urine as we ride around in the humidity and heat.  And she is our tutor.  She knows and understands.  But regardless of “knowing” and “understanding”, how can I offer a ride to anyone when my vehicle smells like urine, right?  It’s a bit depressing. Long after ideas, plans, and goals are discussed and cerebral loftiness is praised and honored, my carpet still tells a different story.  The parts no one wants to discuss.  The stains that don’t go away.

I could pretend our autism is just the beauty in my son’s eyelashes, his gentle demeanor, his sweet smile and kindness.  But the reality is that it’s just as much the incontinence, the seizures, the inappropriate screaming he does when he is excited by a game, the delays or absences in a response back when I talk to him.  It’s really all of it.  And lately, the clouds obscure my skies.  The windshield of my mind is not clear and I cannot wash away the parts I don’t want to see.

I’m not writing a fairy tale.  Once upon a time, I started this blog with some ridiculous idea that I could bring awareness to people who don’t know about autism.  That was at a time when autism, as I knew it, was a fledgling, sprout, fresh from a seed, I didn’t recognize.  When one Googles autism, you get nearly 12 million results in the blink of an eye.  Who is going to come here to get “aware”?

I’ve been writing for two years.  I’ve been criticized, praised, sympathized with, empathized with, pitied, hated and ignored.  Everyone affected by autism, has an opinion.  Every opinion is different, just as every autism diagnosis is different.  I’m different now too.

I think it will always be important to spread awareness to those who have no knowledge of autism.  I find that still every day of every year.  There are millions of people who have no clue what autism is or how it affects those who have it or live with it.  There are people who are rude, uncaring, caring, concerned, misinformed, trying to be helpful, affected by it but in different ways from me, and there’s me and my son.  If just one more person nurtures awareness like a seedling and gives that seedling respect it will grow into understanding instead of hate.  One more ally – one less enemy.

I’m tired.  Tired of petty fights within a community that is supposed to be united.  Tired of hearing how we should view organizations that purport to represent those we love with autism.  Tired of having my identity be that chick who talks about autism all the time.

Spring Break is over.  My son returns to school.  What have I learned this Spring Break?  Nothing.  My son is still different than all the other kids.  He doesn’t talk when spoken to.  When he does talk, he’s obsessing on a subject in which only he shows interest.  He’s playing with toys labeled for 9-36 month old children.  It’s no wonder I cannot throw away or give away old toys.  He’s still trying to figure out the meaning for the ones he received six years ago.

I love him.  He loves me.  We live a different life.  One currently involving a lot of blood draws, medication changes, regressive behavior, fear for me of what the future holds.  We all go through ups and downs, sunny weather and chilly days.  As we head into the rainy month of Autism Awareness, I see a lot of clouds.  But I have no choice but to look past all of that, and with my blue lightbulbs and blue hair, share what I know to get a new mom, a new family, early intervention, to recognize signs and find resources in real life and not here in internet space, because regardless of how I feel, most people still need the news of what autism is and how to help children get the therapies, resources, and education to which they are entitled to make their lives easier.  It still needs doing and I’m one of the ones destined to do it.  So I will be blue this month, just so you know.

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About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
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17 Responses to The Clouds of April.

  1. Lisa says:

    Oh, friend. I understand. I am sorry that the windshield is blurred and the skies cloudy…I am kind of there, too.

    This is a different path that we’re on…but I am glad I found you along the way. ((Hugs))

    • solodialogue says:

      Thanks Lisa, for the hugs. Still have the button pinned on today. People are reading it and smiling at me. Not quite sure about that, but if it helps one person, I’ll keep it on all year. I really should anyway. And along that line, I’d encourage anyone who is interested in “wearing” their awareness to check out my friend, Chris Raley’s etsy here – http://www.etsy.com/shop/CRNineDesigns. I love it.

  2. Erin says:

    This is so beautifully written. The truth is, this is all so hard, and it’s not PC to say so anymore. But maybe the lows help us to recognize more clearly the highs – at least that’s what I keep telling myself. As for the car thing – right there with you my friend. My house feels like a biology experiment some days… My minivan carries multiple air fresheners, but still an obscene mess, and therapists are constantly doing ride-alongs. I’m always worried that my school mom friends will glance inside at pick up time… It is a different path, but it is good to have friends like you along the way. Hugs.

    • solodialogue says:

      Thank you Erin. The PC part of it really “p”‘s me off because – well for many reasons not relevant here. A post is brewing on that… Thank you for understanding about the car. I spend so much time there, I think I must have it professionally detailed. That’s got to pick up my spirits, eh? Thanks for being on the “road” with me. xo

  3. thorgerdur says:

    The sky will be clear again… for sure… It is such a short while ago that your little guy played Harry Potter with his friends at school…he will do that again. My son still shows interest in this baby stuff…he loves the strange sounds and lights. I wonder when he will become aware enough to think it is babyish and I am pretty sure that is what is holding his peers from playing with the same things. Social awareness…and we all carry on swimming one stroke at a time until we reach a shore where ever that will be. Meanwhile be good to yourself

  4. Teresa says:

    Dear Karen. . . and other moms,
    As one with an older child (yes, he is an adult, but he’s still my child) I’d like to tell you this road less taken will eventually merge onto the super-freeway of life. But I can’t. I’d like to tell you this narrow windy road with great precipices on each side will eventually straighten out. But I can’t. I’d like to tell you that the dust billowing up and muddying your car will eventually diminish. But I can’t.

    I wish I could.

    This path we’re on can be long and fraught with challenges. Our child will always be different. Our lives will always be different. Even how we react will always be different. Having a special needs child heightens our stress level and sometimes this catches up to us. Running at 80% stress when everybody else is at 20 can have an impact. It can be hard on our relationships and our bodies. Sometimes it seems we are the only defender, the only protector of our child. And sometimes it feels pretty darn lonely.

    But with each trial we grow stronger. We learn how to let stupid remarks by others slide off without tears. We learn how to ignore prying eyes when we take our not so little child into the women’s bathroom. We learn how to sense a meltdown and remove our child before others even realize there’s a problem. Heck, the other day I managed to know my silent son was about to vomit and had napkins in my hand to stop the mess so that others in the restaurant (yes, the restaurant) didn’t know… We eventually learn to look back at disasters of the past and laugh.

    Sometimes I still feel sorry for myself. Another parent will “whine” about their child with “autism” who in reality barely places on the Asperger’s scale. I know they are struggling with acceptance but I look at them and just wish my child could do so well… It’s our human nature.

    It is helpful to have someplace to share or someone. The internet has been a wonderful resource to help remove some of the isolation we often feel. I pray for all of you to find someone (even if it’s a paid listener) with whom to talk. And while I pray for you to find acceptance and peace that does not mean I wish you not to push both your child and yourself to help him be the best he can be. It is a double edged sword, isn’t it?

    {{{Hugs to you all}}}
    Teresa

    • solodialogue says:

      Oh my stars- I am so lucky that you are watching me. Serious x 100. I know you understand me better than I do sometimes. There’s just no getting around that and I’m so grateful. I think I have that “stupid remarks” thing down but the bathroom thing is getting to be more of a challenge as he gets older. Our mall has a Nordstroms with a family/unisex bathroom and we will wait up to 10 minutes on chairs outside of that one so I can take him in peace. (Funny how he doesn’t mind that “line” while he’s sitting). I’m glad you are foretelling that I will get stronger in recognition – I do hope for that. The internet is a wonderful thing when we find souls to bond with us but like every other part of life – for each good contact, there’s a rotten apple out there waiting too. I guess, relatively speaking the good outweighs the bad by a ton but my sensibility on that issue is somewhat skewed at the moment by lack of listeners – (you sort of read minds don’t you?) And don’t worry here- about the pushing the limits for the best- that never stops, even when the double edged sword nicks me a bit. xoxo

  5. utkallie says:

    Sometimes I just want to escape it all and hide in my house and pretend none of it exists but as you well know…it just doesn’t work that way. I think without us parents, Autism awareness would not be where it is today. We have to keep fighting because Autism needs us even though we may not always want it.

    I want to see a pic of that blue hair. I need to remember to do that next year. I am rocking the blue nails!

  6. Mom2MissK says:

    Hi Karen. I don’t have words for today… just hugs. At least you know one thing for sure — as long as I have your email address and you have mine, you will not walk this road alone.

  7. Lana Rush says:

    Karen, I’m tired, too. And my windshield is dirty and smeary as well. And the smell of my car? Well, let me just say we rotate between 2 car seats so that we have a clean one to put in when an accident occurs. My husband could win a contest with how quickly he can take out and put in a carseat!

    And while Teresa said we grow stronger with each trial, I think I’m just tired of being strong. I’m tired of going through hard times and trying to learn something from it. Sometimes, I honestly don’t want to find the silver lining. I just want to curl up and feel sorry for myself for a little while. It’s just so stinkin’ hard.

    But I know I can’t stay there.

    There’s work to be done, both inside and outside my home. Spreading awareness, educating others, questioning “the norm” sometimes. If I can help some others along the way, that’s even better. I truly want to do that. I want parents to come together, no matter our path, and create change for our kids.

    But at the end of the day, I’ve got a little girl who needs me. A Bird with a song to sing. Right now, I’m her voice. And she is my most important work.

    • solodialogue says:

      You are a strong voice for, not just Lily, but all of us Lana. We all get tired. I’m not afraid to say what I feel. Judge us if you wish – that can’t change the love in our hearts and the good we do. No matter how good you are, there will always be someone to criticize. And yes, that’s tiring. But now, as I finally sit down to write this, I’ve had my blue hair again for about 36 hours. In that time, I’ve already had 8 separate conversations with strangers – one of whom is a mother whose 6 year old son was carrying around his EEG backpack (just like my son did 4 months ago). 7 introductions to the subject of autism which none of them knew about- 1 conversation with a new “kindred spirit”. Awareness may seem old when we write it- but when you wear it – it is a different – good story. xoxo

  8. Karen, many times I read your lovely posts without commenting. Your articles are often inspiring and they are always thoughtful. Today, though, I have to comment because I want you to know, as other folks have, that somedays autism in our lives is actually a very heavy weight. Not only do we have to do so much for our kids or with our kids at different times, but we still have to take care of ourselves. Add to that the extra weight of raising awareness, hoping that someone doesn’t do something that takes away what little support we have and being worn down by the internecine battles among different groups connected to the spectrum. We do get blue.

    I know I do and I don’t even have my kids every day.

    It is your perfect right to be honest about how you feel, even when it’s blue.

    I do believe that someone about this time last year had blue hair and what a tremendous, fun way to raise awareness. But that was a year ago. It was different then. Today is (yes, I am going to say it) a different day. You have earned what you feel.

    We had a very popular politician in Canada in the 30’s and 40’s who is famous for reciting a line I will paraphrase: “let me lay down and bleed a while, then I’ll get up and fight again.”

    You will carry on. I can tell from your posts and the conversations we have had in comments sections and social media that you know there is still a lot of road ahead. Being afraid of what is on the road, even being afraid of the next step makes sense. Admitting to people you are afraid and blue just means you are taking a bit of a lay down.

    • solodialogue says:

      I love that “let me lay down and bleed a while and then I’ll get back up and fight!” Honestly, I think that’s what sleep is for isn’t it? 😉

      I do have my bouts of tired days and a “blue” heart, but now that I’ve actually donned the hair again, it’s revived me. It’s burst me out of the ‘blogging community’ and into the real world community sparking conversations with strangers who know nothing about autism other than that they have heard the word. I’ve been forced to think on my feet, describe and explain, talk and answer questions and (gasp) spread awareness! Who knew? If I stayed bottled up inside my blogging shell, I might’ve thought “awareness” passé but the real world still needs it and so me and my blue hair will be a walking talking exhibit for the month of April again. It’s funny how I’d forgotten the good it does to “wear” what you believe. It really opens your eyes. 🙂

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