Things I've Never Done

I'm thirty-eight years old.

And I've never:

1. Been fired

2. Ridden on a motorcycle

3. Gone skydiving

4.Watched a puppy being born

 

5. Worked as a waitress (see #1, above)

6. Eaten a McRib sandwich

7. Seen Gone With the Wind

8. Worn false eyelashes

9. Run a half-marathon

10. Been on the cover of Rolling Stone

11. Cooked a live lobster

12. Gotten in a fist fight

13. Dreamed in Spanish

14. Hosted my own radio show

15. Officiated at a wedding

16. Written a novel

17. Set a world record

18. Been to me (Charlene fans out there? Anyone?)

19. Sat in the front row at a Depeche Mode concert

20. Learned to play Bridge

21. Pierced my nose

22. Owned a cat

This post inspired by the prompt "list 22 things you've never done," from Mama's Losin' It as borrowed from The Pioneer Woman.

Six Word Memoirs

Are you familiar with six word memoirs? The idea is simple: tell your story in six words. I believe the idea originated when someone challenged Hemingway to write a complete story in six words. He wrote "For sale: Baby shoes. Never worn."

I've read some outstanding six word memoirs, and if you have time I recommend checking out the memoirs at Smith Magazine. Recently, Laura Shumaker (author, blogger, autism advocate) held a contest to write six word autism memoirs. I only had a couple of hours before the contest closed, but I entered three. Here they are.

"Holland Sucks. Want to go home."

For those of you not familiar, this refers to the Welcome to Holland essay that every parent of a newly diagnosed special needs child will come across. This memoir was not a winner, and I'm not surprised considering it isn't exactly full of optimism and acceptance. But sometimes it is exactly how I feel.

"Vaccines not the cause. What then?"

This memoir was a winner! The discussion over the cause of autism, and whether or not vaccines are to blame, plays a central, and often divisive, role in the autism community. I do not believe any evidence exists to suggest that vaccines cause autism, but the question "why?" is one that is always present in my mind.

"We need no words to love."

This was my favorite entry, and though not a winner, describes the parent relationship with a non-verbal child. I think it sums up my relationship with Moe perfectly.

My favorite entry of all (written by someone else) is "Never take your eyes of Joseph." This speaks to me on so many levels. I watch Moe to make sure he doesn't run off or hurt himself. I watch him constantly to keep him from getting into trouble in the house (i.e. splashing in the fish tank or dumping all the toys on the floor). But for years now, we are always observing, analyzing, assessing, and obsessing over Moe's behaviors and progress. Figuratively and literally, we never take our eyes off him.

There are some other fantastic entries, and you can read them all here. The winner,  "Give anything to understand him better," was written by my friend, another parent at Moe's school.

Would You?

If you could ask a psychic to peer into a crystal ball and see the future, would you? Would you want to know that your child wouldn't talk until he was 6, that you'd be changing diapers at 9, or looking for residential facilities at 20? Would knowing make you hope a little less? What if you learned your son had friends, graduated high school, went to college, made his way in the world? Would you work a little less hard now, knowing things worked out in the end?

If you could be inside your child's mind for an hour or a day, would you? Would you want to know that he understands only a bit of what you say? Would you want to know the frustration he feels when he can't communicate his most basic needs? Would you want to know the joy of simple things, like splashing in the water or hugging a toy? Would you be depressed by the knowledge that you can't make things better, or would it help you understand, have more patience, find new ways to get through?

If you could be inside of your child's body for a week, would you? Would you want to know what it is like to be clumsy and unsteady? Would you want to understand the need to touch everything, to lick, to crash or spin? Would you want to feel the relief of a tight squeeze? Would the lows help you manage his tantrums, or would the highs scare you with the feeling that he'll never be able to focus?

I have often wanted to see the world from Moe's perspective. I've wished to take a quick peek into the future. But if given the chance, would I do it?

Written for Mama Kat's Writer's Workshop. I was liberal with today's prompt: Ask the psychic! You have an opportunity to get any question answered in regards to your future. What will you ask?

No More Wishes: Redux

A few months ago, I wrote about the song "Airplanes" and why I wasn't making any more wishes. I wrote about hoping instead of wishing, with hope being more grounded, requiring "hard work, long days and exhausting nights." And I still believe that.

But sometimes, hope is hard to come by. Day to day, surrounded by other kids with Moe's delays, it is easy to remain optimistic, to lose sight of how far he has to go. But it doesn't take long before reality slaps me in the face.

Take last weekend, for example. Moe seemed fine: no fever, not stuffed up, no cough. But from Friday afternoon he did not stop crying or whining. It was pretty much continuous, even through the night. We were worried. So on Sunday, Jeff took Moe to urgent care. And do you know what they do for a non-verbal autistic kid who can't tell you where it hurts or even if it hurts? Everything. They checked his ears, throat, stomach, teeth. They checked for twisted testicles. I don't even know what that is, and I'm definitely not Googling it. But I'm sure Moe freaked out at the exam. The doctor didn't find anything except maybe a little fluid in his ears, and I'm glad she was so thorough.

But it would have been so much much easier if Moe could just tell us about how he felt, even a little bit. Sign "ouch" and point to an ear, throat or tooth. Something. Anything.

I just got a birthday party invitation for next month. The kids from Moe's old play group are starting to turn four. Four. That's not even close to being a baby anymore. The party is at the park, and the invitation says to bring bikes and scooters. Moe can't ride a scooter. He can't even pedal a tricycle. No one at this party will be judging us; they know about his delays. And I know it is important for Moe to go to things with typical kids. But I also know that Jeff and I will spend the day chasing Moe around the park while the other kids pedal right past him, literally and figuratively.

I recently heard another song. It is from the album Lonely Avenue by Ben Folds, lyrics by Nick Hornby. It is called "Picture Window:"

You know what hope is? Hope is a bastard. Hope is a liar, a cheat and a tease. Hope comes near you, kick its backside. Got no place in days like these.

It turns out, Hope is a fickle lover. Sometimes you work hard and hope with all your might, and there are still days and weeks that kick your ass. And Hope laughs at you, and throws another punch: a regression, a tantrum, a teething toddler. Even the phrase "get your hopes up" is revealing, since what goes up must come down. Or so they say.

And then, just as suddenly, when you thought all hope was lost, you have a good day. Smiles and giggles, eyes looking right at yours, a wave goodbye. So you start to think maybe? Maybe everything will be okay. Maybe this time will be different. So you start to hope all over again.

After all, what choice do you have?

Today's post is part of Mama Kat's Writer's Workship, and was inspired by the prompt "a song of significance."

Finding Balance

I keep a list of blog ideas for those days when I need some extra inspiration. I've had one for a while that says "making autism a factor in my life but not the focus." This is not something I know how to yet; it is a goal.

When Moe first started his in-home ABA program, I joined an online group for parents of kids with autism. I asked for tips on surviving a full time, at-home therapy program. In addition to "find a hobby," one piece of advice that stuck with me was to not burn out the first year.

But you see, I'm not good at pacing myself. When I have a new problem to solve, whether it is something minor, like buying a new comforter for Jelly's bed, or something major, like an autism diagnosis, I tend to obsess. I reasearch. I read. Instead of sleeping, I think and think and think. It is my way of getting control over the situation, and I like to be in control. I suppose that's why I was a good program manager, back when I had a career.

Because of all that reading and research, I always question whether I'm doing enough for Moe. I read about parents running full time Son-Rise programs and wonder if I should be doing that. On top of his 30 hour a week special day class, Moe gets extra OT and music therapy, but some kids in Moe's class get extra 1:1 ABA, some do more speech therapy. Should I be doing that too?

The other day with my parents at dinner, I expressed this concern (it wasn't the first time), and Jeff got a little upset with me. He pointed out (again, not for the first time) that Moe basically has a full time job and he's not even four years old. My dad pointed out that the more I spend with Moe, the less time I have for Jelly. I have to try to balance the needs of a typical toddler and an autistic preschooler, as well as our needs as a family, and my needs as an individual.

But right now, autism wins. These are crucial early development years, and perhaps it is unrealistic to think that Moe's needs could be anything but the defining factor in our lives. I think I'm going to make turning autism into a "factor, not the focus" a long term goal. For now, I'm going to do my best to give myself an occasional break (provided by my book club and sporadic trips to the gym) and try to really believe that we are doing all we can for both our kids.

Today's post inspired by the Mama Kat's writing prompt, "Finding the balance. How do you manage?"