Happy Autism Awareness Month! Or for me, this is my life, every day…

I was down with a pretty nasty migraine, yesterday, so I missed World Autism Awareness Day and Light it Up Blue, but that’s okay.  In my more lucid moments, I was with you all in spirit. I appreciate all of my friends who spoke out for me. And I have the rest of the month to make up for it, since April is Autism Awareness month. Our whole family will be running/walking to support our local autism center, The Autism Center of Tulsa in their big fund-raiser, the 7th annual Ready…Set…Run! 5K and Fun Run on April 27th.

We always turn this into a major event and get very creative with our team names. We love that our team has grown bigger every year, too! Last year, we were The Companions of Trevor (my son’s name) with a Dr. Who theme – complete with customized t-shirts for team members! This year, we’re going with a Walking Dead theme. Trevor has a favorite stuffed elephant named Fred, so we’re calling ourselves Trevor and the Walking Freds. Not too bad, eh? We’re inviting friends and family to come “zombie out” and be Walkers with us to help us raise money for a very worthy cause. If you feel like joining us or donating to our team, click here.

Some pics from last year’s walk:

I’ve been told recently that I don’t talk much about what life is like with my son. I think sometimes it’s because I find it hard to explain what life with Trevor is like. I usually start by giving some lame generic definition of autism, explaining that it is a neurological disorder that affects 1 in 88 children, with deficits in social and communication skills, like that tells you anything about him. I guess I’m too close to it; autism has become so ingrained in my life that I can’t separate it. The adaptations I’ve made have become automatic. It affects every facet of my life – every decision I make, I have to think about how it will affect my son and his schedule. It’s like separating out your entire nervous system and explaining what it means to your body.

My son is a senior in high school this year. He still watches Sesame Street and The Wonder Pets. He reads at a third grade level. He needs supervision to do his daily chores and to complete activities of daily living. He has difficulty expressing his basic needs, especially when he’s angry, so he may become physically aggressive when frustrated. He can become fixated on one thought and ask you the same question over and over all day long. It can be exhausting just getting through a typical day, let alone a bad day. He is also very loving and caring. He hates to see anyone upset – even strangers, and especially babies. He doesn’t like it when anyone of us in the family are sad and always tries to cheer us up. I must get at least twenty hugs a day – not many mothers of teenagers can say the same.

There will be no going off to college next year for him. Instead, he will be working with some fantastic job coaches at A New Leaf and living at home. We will continue to help him to be as independent as possible. I know my son has a very different path set in front of him than his neurotypical peers and a very different time line for meeting certain goals – some goals may even be out of reach. But we won’t know unless we try. He has surprised us more than once on what he can do.

I love my friends to death, but sometimes all of their good news about their children’s bright futures is hard to stomach, especially when I’m just happy my son’s starting to socialize better and is no longer being combative with the school staff. My husband and I try to keep our perspective on him alone, his own personal timeline, but then there are those pivotal moments that sneak up on you – a child your child’s age does something that you know your child will never do. It can’t help but break your heart. We are human and we are allowed those moments of grief as much as we are allowed to find joy in those other moments when our children do something that for them is extraordinary that other parents would find mundane. There is a balance in there somewhere, we just have to find it.

It is very easy to feel overwhelmed and depressed about our son’s future, but he is happy, so to me, that is just wasted energy. Besides, my son has helped me appreciate life in a very unique way and I’m much more patient now than I ever thought I could be. If that’s not a clear picture of autism, maybe that’s helped you become more aware. For more information on all things autism-related, check out these helpful websites: Autism Speaks and Autism Society of America.

Stealing Time and Being Selfish

I am often taken by surprise when others remark on how amazed they are that I find any time to write because I have a son with autism. Maybe because I don’t know any other way. Maybe because I have to write and I must find the time.

True, some days he can be very demanding. Here are some typical interactions we have on those trying days:

“Mom, are you having a good day?” (This is asked at five minute intervals.)

“Mom, are you hungry?” (Which means he’s hungry and I need to find him something to eat before he uproots the pantry and the fridge trying to find something on his own.)

“Mom can we order an Abby doll?” (Which means he wants me to buy him a character doll from the Disney movie Chicken Little that you cannot buy anywhere on the planet, but my son refuses to believe this and continues to ask for several times a day even when told “no” – not a pretty argument.)

“Mom, where is Dad?” (This is also asked at five minute intervals even after he’s given the answer.)

“Mom, can Joey and Ashley come over to our house?” (Or whatever relatives couldn’t possibly travel large distances to reach our house today – another fun way to disappoint him.)

“Mom, you look great.” (Said repeatedly, but not often enough.)

“Look, Mom! Bananas!” (I must then pretend to be hit with a face full of bananas and cry, then Trevor will console me and apologize for ‘hitting’ me with said pretend bananas. yeah, thanks for THAT game, DAD. Also repeated ad nauseum.)

Not to mention the odd number of head noogies and bone-crushing hugs that come out of nowhere.

On these days, I do struggle to find time for anything else, let alone time to form a cohesive thought or capture that thought onto the computer in a string of words that make any sense at all. (I should always stop writing once he asks any of these questions the first time. Always.)

And he is only one person in my family that requires some of my attention. My time is in high demand.

So how do I find time to write?

I steal it.

Writing is more than just a hobby to me. It is something that I have to do. If I’m not allowed to express myself through the written word, I will… well maybe not climb a clock tower and do something blood thirsty and violent, but I will be extremely cranky. You don’t want to see me when I’m cranky. Just ask my family.

So. Instead of making their lives unbearable, I get up early in the morning while they’re all still asleep – and more importantly, silent – and I write.

Without interruption.

For as long as I can.

Some days I steal the time while they are all away at school or work. On those days, there are many other things I could do with this time; laundry, walk the dogs, yard work, etc., but none of those things will fulfill me as much as my writing. Maybe it’s selfish to use this time just for me, but when I do get to exorcise my writing demons and exhaust that creative spirit, I don’t resent my family’s demands on my time. I’m a much more patient parent, a more tolerant spouse.

I am happy.

And we all know that when Mama’s happy, everybody’s happy.

I think we all have to steal a little time for ourselves, to be selfish a bit with our time. If we don’t take any time to pursue our own interests, we cannot be there for our loved ones without feeling resentment or frustration.

Make sure you take a little time this week to be selfish. Your family will appreciate it.

What Autism Looks Like – The Autism World Responds to 50 Cent

So not being connected to the internet for a few days due to my modem dying put me behind the times as far as current events are concerned. Reading through the lovely blogs I follow, I was so saddened and angered to discover the big blow up that occurred earlier this week over the careless words 50 cent rattled off in response to an impatient fan who threatened to shoot him if he didn’t release his new album. He told this fine young gentleman, “yeah just saw your picture fool you look autistic”. He didn’t stop there, though. He went on to tell any special ed kids to stop following him. Words cannot express my initial response to that. Well, they can, but you’d probably rather not hear it. Too many expletives. I actually sounded like a low rent rapper myself for a bit. I mean seriously, why not just block the ignorant fan? Why offend an entire community of kids and their families that you obviously don’t know anything about? BIG MISTAKE.

I learned of this disasterous misstep when reading one of the best blogs out there on autism, a diary of a mom. She posted such a touching response to this incident that my heart ached after reading it, and not just because I have so been in that same place she was in many, many times. She also made me aware of Holly Robinson Peete’s open letter to 50 cent in which she talks frankly to him about how harmful his comments were and how many of his 8 million followers may actually have loved ones affected by autism – 1 in 88 – and asked him to at least delete his comments. She went on to say:

“If you’ve read your mentions today I am sure you have felt the wrath of autism parents. We are no joke. Neither is autism. We are not about to let you attempt to make “autistic” the new “R-word” under our watch.”

She then sent him a picture of her own son who has autism.  After Holly’s post, his twitter account has continued to be deluged with similar pictures so he will know #thisiswhatautismlookslike. I tweeted my own photo today, which I’ve included in this post. 50 cent did delete the offending comments.  It also looks like he deleted all of the comments from the families as well and most of the pictures – I only saw one still on his page, today. For some in the autism community, they are waiting for an apology. That has not happened, yet. To me, that silence speaks volumes.

 

Update posted 7/12/2012: Earlier this week, 50 Cent did finally make a public apology to the autism community. He stated, “I realize my autism comments were insensitive, however it was not my intention to offend anyone and for this I apologize.” (For full story see link here.)

This IS what autism looks like.

When am I Going To Find Some Freaking Patience Already?!!

Patience is its Own Reward

Being the mom of a son with autism, I often hear things like, “You are so patient with him” or “You have the patience of Job”.  Sure, I can stand my ground in a public place while my son is yelling at me, throwing a code red tantrum, and not only keep calm with him, but even if someone comes over to offer help or to ask me to keep it down, I can turn to them – while remaining placid as a lake in Canada and controlling my desire to throttle them – and say, “My son has autism and I’ve got this under control. Thank you.” Yeah, the whole patience thing was totally developed by necessity and definitely not by my choice, I can tell you.

I am not naturally a patient person.

One only has to hop in the car with me and go for a drive, then you’ll see me at my worst. (Only in really heavy traffic and then I only swear like a sailor and make creative hand gestures while having loud, one-sided conversations with the other drivers. I’m not dangerous or anything, honest.) I learned the hard way that if you beg, plead, scream and yell, or stomp your feet at a kid with autism to cajole him into doing what you want, if he’s not ready or willing to do it, odds are he’s not going to do it EVER – the mountain will not be moved – and all of your efforts to force him will only makes things worse.

This reminds me a lot of my writing journey thus far. I’ve had to learn to be patient many times over – it’s like someone out there is trying to tell me something as I bang my head up against wall after wall. (Patience is important or a virtue or something, I don’t know.) I’ve wanted to be a published children’s writer more than anything. Before I joined a critique group or let anyone even read my first story, I wrote out a picture book manuscript, I’m the Princess!,  somewhere over three thousand words long. I had to cut it down to two thousand words – and I thought that was quite an accomplishment – to submit it to a writing contest. I was sure that winning this contest would be my key to getting published quickly. I was so confident that my story was the best, that I waited for the inevitable notification of my win. When it didn’t come, I was completely shocked. I didn’t even place! What was wrong with those people? Didn’t they recognize talent when they saw it?

After my denial wore off, I decided that maybe I needed to try something else. Thankfully, it wasn’t long afterwards that I came to my senses and joined SCBWI. I was so embarrassed when I learned that the average length of a picture book manuscript shouldn’t really be any longer than fifteen hundred words. (Now, I think they like them even shorter.)  I realized after studying many well written picture books and learning more about the whole writing process that I’m not really a picture book writer. Picture books are extremely hard to write well and are a completely different animal. I think the best ones are more like poetry. Maybe some day I’ll master that format, but I know I am far from it right now. Until then, I’m the Princess! will stay buried deep in the vault, as a painful reminder of where I started. Although it did make a brief appearance at one of our local SCBWI schmoozes where some of us brought examples of our writing comparing our early works to our recent works, to show how we’d grown as writers. Yes, the laughter was the loudest during the reading of my “before” example. Okay, I can’t keep you in suspense, here’s just the first paragraph:

Princess Isabelle fluttered her dark eyelashes as she opened her dazzling deep blue eyes. A sunbeam fell across her long wavy light brown hair, making an ocean of golden thread on her pillow. She sat up slowly and stretched her delicate arms into the air, her perfectly pink mouth opened into a tiny, perfect yawn. A most enchanting smile crossed her face as she remembered her plan for mischief this morning. She jumped out of bed, slammed open her huge golden doors and yelled down the corridor.

That’s all the sample I can bear. I’m afraid it didn’t get any better in the following paragraphs. I left nothing to the illustrator’s imagination – mistake number one. (No need to go through them all, seriously, this manuscript was thoroughly dissected at the schmooze.) How could I have crammed so many flowery descriptors into one mouthful? OMG! That is just painful to look at.

Still, I didn’t learn all the lessons in patience that I needed to. I did realize that I wanted to tell too much of the story for the picture book format and moved on to the daunting middle grade format. I was scared at first. How could I possibly write an entire novel? Three thousand words was easy, but thirty thousand words? Fifty thousand? Impossible! But I started writing anyway. Slowly. One chapter at a time. I studied my craft and learned as much as I could this time about the rules of the middle grade format. I attended conferences and joined a critique group. I started reading middle grade novels like crazy. Finally, a few years later, I had my first completed middle grade novel and my critique group loved it. It still needed to be revised and had some plot issues to work out, but it was a great start. I was a real writer. But sometimes it was hard to hear about other writers in our group sending off their work to editors and agents; I wanted to be doing that, too. I went ahead and sent out work that wasn’t anywhere near ready. I received form rejection letters in return for my trouble. Oh, patience! When would you be mine?

After so many form rejections I lost count, no personals, and no requests for fulls, something told me it was time to go back to the drawing board. Then, while in the middle of revisions on my first middle grade and halfway through the first draft of my second middle grade, I had this idea for a YA novel that would not go away. It was so different from what I’d been writing I was a little worried about switching gears so completely. I remembered something I’d heard an author at a conference I’d attended (I think it was Rachel Cohn, but I can’t be sure) about following the voice that pulls you the strongest and I knew I had to at least try it.

I was beyond nervous the first time I brought a chapter of Institutionalized to my critique group. They were surprised by the change of direction, some of the language, and content, but they also loved the main character and THE VOICE. I’d finally gotten it right. And once passed the initial shock, they all were on board and so supportive. I wrote this one so much faster and so differently than all the others. I knew this was one THE ONE. This time, though I didn’t want to rush it. I received some critiques from editors and agents at conferences, all with positive results and some very helpful constructive criticisms. I did the necessary revisions and had it critiqued again and did more revising. Finally it was time to start sending it out. YIKES!

The results so far have been much more promising than the first time, with personal rejections and helpful comments and requests for additional pages, but the road is far from over and I still find myself looking too far into the future, wistfully wanting to skip the necessary steps and be crossing that damned elusive publishing finish line already. One day at a time and one step at a time. I know, I know!

Do you ever find yourself feeling impatient with where you are as a writer? Do you ever wonder ‘why don’t they see how talented I am and pick me already?’ What are some of your embarrassing stories along your road to publication? I’d love to hear them.

awareness 2012

Reblogged from a diary of a mom:

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Diary of a Mom - 9 hours ago. ~ I wish I could really have captured how beautiful this looks. There are blue candles flickering in every window of our home tonight in honor of World Autism Awareness Day. As I've done my best to explain to my beautiful girl, the light serves as a reminder that people with autism need our help with some things so that they can do what we know they are capable of - which is ANYTHING.

Read more… 1,761 more words

I find myself at a loss for words on World Autism Awareness Day. Thank fully, another parent found all of the words I was looking for. After I read this post, I was so moved, I didn't need to add anything else. This is life with autism.

#writemotivation Check In

Here are my goals for March:

• Complete my novel revision
• Post two blog entries each week
• Update my journal project and keep it current

One week in on this challenge and I’m fairly wobbly on the balancing act of actual writing versus platform growth and maintenance. I keep picturing Janelle Monae performing Tightrope in my head. I did manage to post at least two blog entries and to work through fifty pages of revision on my latest project, Institutionalized: I’m not Crazy. It’s a young adult (YA) novel about a young girl who is put away in a psych hospital as an out of control alcoholic runaway after she witnesses something she shouldn’t. She struggles with the abrupt changes in her reality brought about by what she witnessed, and how to convince someone – anyone – that she’s not crazy.

Now I only have 240+ pages to go. I just have to make sure I’m revising at least eighty pages a week for the rest of the month. Next month, it’s submission time. *gulp*

I didn’t even touch my journal project. I have been thinking about doing some kind of project/book dealing with autism for a long time, but I haven’t been ready – it’s just too close to the surface, the emotions, for me to write anything good. People are always curious about what life is like with a child autism and it’s difficult to explain in general terms, sometimes. One friend recently asked me if he would ever drive a car. I had to explain that even if he could ever get over his coordination issues, he could never get past his attention issues. Children with autism have difficulty filtering out stimuli and so can easily get overstimulated. Not good for rush hour traffic. Even if an airplane flew overhead – CRASH! So I came up with the idea of journaling my life with my son Trevor for one year. Maybe that could help me show what life with autism is really like and vent all of those emotions at the same time. Trevor turns eighteen next January. All kinds of things will start to change with this birthday. It’s a good year to try it.

Even when I don’t make daily entries, I make brief notes on my calendar and I’m just really behind on putting them down in the actual journal format. That’s the goal for this week for the journal- to get those entries caught up.

How are you doing with your writing goals? I’ll leave you with this motivational song to help you keep the balance going as you try to reach your writing goals as well:

Happy Birthday, Dr. Seuss! Trevor still loves you and so do I.

Dr. Seuss has played a prominent role in our family. I read to my children from a very young age, knowing that one day, they would take off without me on their own reading adventures. Well, one of my children did. My son, Trevor was different. My son was diagnosed with autism at the age of four. He needed the security of repetition, of familiarity. He could never get enough of Dr. Seuss. We once flew from Oklahoma City to Denver on vacation and although Trevor loved being in an airplane, it was something new. His anxiety was extremely high. On that flight I must have read Go, Dog. Go! and One Fish, Two Fish, Red Fish, Blue Fish at least twenty times. Each. (I can still read those two books with my eyes shut. *wink*)

Shortly after that trip, we expanded Trevor’s Seuss library – and I may have buried those two books just to save my sanity. (That incessant rhyming was driving me mad!) I’m sorry to say that I fell out of love with Dr. Seuss every time Trevor found my hiding place and those two books resurfaced and I was forced to read them again.

We ran into another situation with Dr. Seuss when Trevor hit grade school. He found a friend in his autism classroom that also loved the Dr. Seuss books. In fact, they both loved Dr. Seuss so much that they would spend the whole day talking in nothing but Seuss dialogue. All his classmate would have to say to get things started would be, “Hey Trevor, ‘Are you my Mother’?” and off they’d go exchanging lines from that book until they moved onto the next one. After much arguing, banning “Dr. Seuss talk”, crying in frustration, I learned to find the silver lining in this problem; he had found a friend.

Life with a child on the autism spectrum can sometimes feel like you have chaotic Things rushing about trying to help you fix a small problem only to end up with a wrecked house. The story of The Cat in the Hat and the other longer stories helped me fall back in love with Dr. Seuss and embrace the chaos. Who says life has to be neat and perfect? Who says our kids have to be that way either?

Seuss really wrote stories for his audience and not for the parents. Although his stories may have a moral or a message, they do not take precedent over the telling of the story itself. What parent would want a writer to tell kids that if they totally wreck the house and break all the rules, but manage to clean up and hide all signs of their crimes, they don’t necessarily have to tell their parents anything about it? I love that. I love how he ends The Cat in the Hat with a question – making kids think for themselves and NOT giving them the answer. Refreshing, no?

My son is seventeen, now, and although he can read by himself – all the way up to a third grade level – and he does read many other books, he still likes for me to read to him. And his favorite books are still by Dr. Seuss. I love you, Trevor.

And I love Dr. Seuss. Happy Birthday!