Month: May 2015

Ok

Thursday wasn’t okay, it was better than okay: 

 It was awesome. 

We went out to lunch at Panera and he stood in line and he participated and he sat at the table (mostly) and he ate (okay, I fed him) and he smiled.
But the five and a half years before that of trying restaurants wasn’t okay. 

It wasn’t okay when he was a toddler and I was determined he would learn how to eat at a table and I packed toys and treats and sat him in high chairs and apologized to my friends over and over and over while I sweated from embarrassment wondering why we couldn’t even eat lunch out. Ever.

It wasn’t okay learning that he regressed every time we tried a new restaurant. That he would stop talking. Or stop eating. Or writhe on the floor under the table. Or try to escape to another table or the bathroom or out the building or anywhere just to be away.

It wasn’t okay.

It wasn’t okay for a long, long time.

And then it was. 

And I think about all the other times it’s not okay. 

Its not okay that after going out to lunch, after doing SO well, his OCD was so intense he almost couldn’t make it back to the car.

It’s not okay when I’m on the diaper aisle.

It’s not okay when we are leaving the grocery store without our groceries because the screaming was worse than usual.

It’s not okay when I cancel physical therapy because six months later he is still spending the whole half hour biting or fighting with her rather than working on his tasks.

It’s not okay when I have to think about a safety plan. And a bolting plan. Or when I have to eye the nearest exit in case he makes it there first. 

It’s not okay to think we can visit THAT house because it’s too close to the street and he’d die the first time he bolted.

It’s not okay when people ask if he’s in kindergarten and I say “no” and then cut off their next questions with a curt “We withdrew him from his DD class last year. We homeschool.”
It’s not okay when the next answer is either “No. He doesn’t read yet. He doesn’t know his AbCs but we are working on it.”

Or

“I really don’t know. We are just taking it a day at a time.”

It’s not okay that at 5.5 he still struggles just to exist in this world with us.

It’s not okay that he hurts.

It’s not okay that he cries.

It’s not okay that I cry for him.

It’s not okay that his life is hard when I do everything I know to do to make it easier.

But then we try something one more time. Because even if it’s not okay and even if it’s hard we aren’t going to give up.

So we try.

And it works.

And it’s okay.

And all the rest of those things that aren’t okay just kind of fade into the background behind “today was awesome.”

And I know that those things back there may not be okay today and maybe they won’t ever be “okay” but no matter what, he will be okay. And will be okay. And we will be okay.

And that’s awesome.

❤️

#SpectrumMom   

   

I wasn’t born to be a mom

I have no business being a mother.
It’s something I think about a lot. I keep coming back to that: I don’t know how to be a mom.
I wasn’t “born to be a mom” like so many of my friends.
It’s not in my makeup, not who I am. 
So I figured I may as well, on the holiday I feel least deserving of praise, make myself a list. 
And I did.
1. I don’t know what to do with a child for more than 20 minutes at a time. You’re almost six years old. That’s a lot of 20-minute sections. But I can’t do it. It’s like I have an internal timer. You can have my complete, undivided attention for 19.5 minutes and then I WILL look at my phone or go pee or start cleaning up or change the cat litter or sneak into my closet to eat a piece of the Halloween candy from last year that I made you sacrifice to the Great Pumpkin.
2. I made you sacrifice all but 5 pcs of your Halloween candy to the Great pumpkin. For your health.
3. And then I ate it.
4. I keep fruit and nuts in my bedroom so when you wake up before I do I don’t have to get out of bed to feed you.
5. I told you that eating apples in bed for breakfast is kind of like a mini birthday. And that only special kids get breakfast in bed.
6. Sometimes I yell at you. I’ve tried the rubber band thing and the five ring thing. I still yell.
7. I yell.
8. I get really freaked out by poop. If you move even an inch while I wipe your bottom I’m probably gonna scream.
9. I scream.
10. I give you the vaccum and let you do outer space experiments by sucking spiders into the vortex.
11. I don’t kill my own spiders.
12. I told you spiders are poisonous.
13. Even the tiny ones. 
14. I hand you whatever I can find in the car to keep you busy. I don’t care about the mess. Here’s an ice scraper and a cup holder-shaped box of Kleenex. A sun visor. Three packs of gum. Anything. Here kid, go crazy.
15. I rarely clean up messes right away. I save them up. So I can have my own version of the Olympics every weekend. Like the “oh crap it’s filthy and if DHS comes I’m totally losing my parental rights so hurryyyyyyy. Fasterrrrrrrrr.”
16. I have pulled up your comforter and laid you down on top of it rather than changing your sheets. I only change bedtime sheets if there’s pee. Or vomit. Or poop. Anything else has to wait for morning.
17.  I take pictures of you in your underwear. And diapers. And on the toilet. You have zero privacy.
18. I take pictures of you sleeping. I’m like the stalker that wouldn’t quit.
19. I let you do dangerous things because I think you should have adventures.
20. I let you do dangerous things because I believe you should learn from your own mistakes.
21. I let you do dangerous things because I’m checking Facebook. 
22. Or the blog. 
23. Or thinking about how mitochondria are the powerhouse of the cell.
24. Or I freak out because you’re doing something dangerous.  (Which means poison or knives, basically. Or anything in my room.)
25. I told you that if you eat boogers you would get germs and get sick. Now every time you pick a booger you think you’re going to die.
26. I haven’t figured out how to convince you that you won’t die without also endorsing eating boogers. So I told you to hurry and eat fruit and drink water to wash the germs out of your mouth.
27. I manipulate you into eating fruit and drinking water.
28. I use this as a way to get rid of the extra fruit I overbuy. Because I inevitably buy pears and apples. From SAMs. On the same day.
29. I put my cauliflower on your plate. Every time. I mean, I have good intentions. But I can’t cauliflower.
30. I tell you that you’re too tired for another story.
31. If you cry then I use it as proof you’re tired. Which may actually be correct. Or not.
32. I know the ingredients in play d’oh. Because I’ve checked it after you ate it. And saw “non-toxic.” So I still give you play d’oh. And you sill eat it.
33. I told you that on rainy days you’re not allowed to be loud. 
34. I may have told you it said that in the bible. You don’t understand coveting asses yet anyway. Rainy day quiet should totally have been there instead.
35. Sometimes I hear you in the morning and I cover my head with the covers because I just can’t “mom” or “adult.” 
“Hiding Momma” is one of your favorite “games.”
36. When you were a baby, sometimes I would nurse you just to keep you still so I could close my eyes for a minute. That’s right. I manipulated you with my boobs. So I could sleep.
37. Once, when you were a baby and I was changing your diaper, I started talking to someone and you rolled off onto the floor. 
38. When you were a baby and you’d be awake every two hours, I used to recite my favorite movie lines to you because I couldn’t think of anything else to say. And I was tired. So your founding neuronal synapses were triggered by scripts from Underworld and Lord of the Rings and You’ve Got Mail and Sense and Sensibility. Which explains a lot, actually.
39.  When you were a baby, the very first time I ever cut your finger nails, I cut your finger. You bled. You screamed. I did that. I still think of it EVERY. SINGLE. TIME. I cut your nails.
40. There are so many mess ups I can’t list them all.
41. I’ve messed up every day since you were born.
42. I’ve messed up in every way I possibly could since you were born.
43. Sometimes I mess up in the same way over and over for awhile before I figure out I’m messing up.
44. I often feel overwhelmed by being your mom.
45. I often feel overwhelmed by you. 
46. I’ve apologized to you almost every day of your life.
47. Every single day since you were born, I’ve been aware of my imperfections as a human. Of my selfishness. Of my laziness. And every day since you were born I’ve changed something about myself. Because I love you. I love you more than myself. And I want to be your mom and I want to be the kind of mom you will be proud of and look up to and love, not just because I’m your mom, but because I’m the mom you would choose.
You see, I wasn’t supposed to be a mom.
48. I’m not made of mom-stuff. 
49. I’m a mess up of a single mom who just happens to love you so much that I can’t even imagine all the ways I don’t deserve to raise you.
50. I wasn’t born to be a mom. You are making me into a mom. 
And I let you teach me every day how to be because without you, I have no idea. 
And every one of those lessons are cherished.
And with every flaw I find in myself I cherish your flaws even more.
The more I understand myself, the more I understand you.
And that journey is kind of turning me into the best mom ever.
So… Thanks.
And happy Mothers Day, Sweetie.
I love you.
❤️
#SpectrumMom
  

Drowning 

Sometimes I don’t realize just how important something is to me until he accomplishes it, and then the flood overtakes me.

I was a hyperlexic toddler. I learned words and how to read, but I didn’t really have to be “taught.” I just understood. And the more I understood the faster I learned. And the more I read.

My father bought me a Grey’s Anatomy for my 10th birthday as a joke – or not – because I’d read all the books in his 100 classics collection and needed something new to read.

I’m surrounded by stacks and stacks and stacks of books.

Fiction, non-fiction, educational, medical, poetry.

And in the irony of the parent-child dynamic that is “us” My Boy doesn’t understand letters and even worse, he doesn’t CARE about them.

Words are often meaningless.

Arbitrary beyond the inherent arbitrary nature of words.

They are vague, unknown things. Letters are pointless. Writing torture.

He hasn’t mastered singing “ABC’s” yet, although sometimes to please me he will try.

I think of all the parents who wish their children were athletes or ballerinas or musicians or liked Thai food – just because they do.

I think how we parents want our kiddos to share the pieces of us that we cherish most.

And how disappointed we are when it doesn’t happen.

And we autism parents often, in an even deeper way, have disappointments about the things our kiddos can’t or won’t do and – the hardest – may never do.

And that’s where I am with reading.

I am prepping myself that not only may he not enjoy or want to read, he might not be able to.

And if he does learn to read one day (yes, he’s still young) then it may be a challenge for him. Too hard to enjoy. Too hard to come easily.

These pieces of his brain that he just can’t quite seem to access may be so tightly locked up that reading a book may be years away.

And then I face the reality that he becomes not just different from me, but my opposite.

In one of the ways I most identify as a part of who I am as a person.

And it’s hard.

And most of the time my thoughts skip around these ideas like rocks on a summer lake until today Grandma and a surprise bribe and a new letter game and a calm day and a hop and a wink brews up the perfect storm – and he does the activity.

And the hopes and fears pour out of me so fast it’s as if I’m standing in the middle of a flood.

A flood of resistant behavior and dyslexia and dysgraphia and visual discrimination and visual tracking and fine motor and motivation and comprehension and auditory processing and phonemic and phonetic awareness.

I know I’m not going to drown in it.

I know the flood isn’t going to take me down.

But I’d be lying if I said that feeling the water rise didn’t make me panic.

Oh, the days when joy triggers fear.

Aren’t they something.

#AutismThings 

❤️

#SpectrumMom

 

P.S.

Pic of my Boy’s stamp activity. 
All caps completed.

Which is 26 direct tasks.

Which is pretty much surreal.

And amazing.

And terrifying.

P.P.S.

And no, it isn’t just about me.

Or him.

It’s about us.

And doing this together.

And Grandma. Because she’s the one he did it for 😉

In Search of a Comfortable Barcalounger

I have been putting this post off for weeks. I’ve told myself that I have writer’s block, that I’m too busy, that life, you guys.

Really, I am just hiding out. From myself and from you and from this blinking cursor who knows that I won’t write another thing until and unless this comes first.

Deep breath.

Today, I am meeting an estates and trusts lawyer. In 33 minutes, I will put on some nicer shoes, hopefully remember some earrings, and get in my car to meet my parents at the office of their lawyer and discuss my son’s future.

Today, a man I have never met will ask me, “Do you think your son will be able to manage his assets when he reaches age 18?”

I will look at this man, a stranger until today, and say, “No. I don’t think so.”

I wonder if this man…

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