I learned to use the self-timer on my camera. I took this picture while on my run this evening.
And I took this one first thing this morning....
Oh yes, it was one of those days...
Sometimes when I am with Greyson…I feel very… incapable.
I rely so much on verbal communication. So since he can't talk, he stumps me. Oftentimes I don’t know what he needs…I don’t know what to do….and from his reaction I can tell that everything I am doing is wrong sometimes...And it leaves me with an overall sense of... incapable. Sometimes I feel like he is a newborn baby…but bigger and stronger and louder and more confusing. Is he hungry? Does his stomach hurt? Today we just felt off. It's funny- on my tough days I ask myself- "Is today tough because Greyson has Autism, or is it tough because I am a Mom, and sometimes being a Mom is tough! Many times I start to blame Autism and realize- these are the same types of feelings ALL Mothers feel. And I know that because you have told me that. Thank you!
Today, he barely looked at me. He wouldn't really connect with me. I felt like a ghost and like I didn't exist in his World. …. Longing for just one extended period of eye contact with him. Hoping for an invitation into his World. Searching for a connection or a look that said, ‘Yes, I remember you. I was in your belly. I love you.”
Today I ordered “easy” and they messed up my order. They totally screwed me up with some other guy. I am diving into foreign ground….getting opportunities to exercise my positive muscle…opportunities for Brave. I like positive…I like brave…but today I was craving a big delicious plate of Easy....
The other day I looked for ways to create Easy. I found it while making my -almost-every-single-day peanut butter and jelly sandwich for lunch.
We were almost at the end of the peanut butter....so I got out my knife- prepared to dig for that teaspoon....you know- when you hurt your hand from shoving it in so hard and you get peanut butter all over your hand and the top of the knife? I unscrewed the top and was about to make my first strike with the knife, and I said, screw it. I knew we had another brand new jar, so I let the remaining peanut butter in the old jar go to peanut butter heaven in the trash.
On Monday's we have preschool at my house "Two University"- 2U. Everyone is 2 and everyone but Grey is "Typical" so G can learn how to socialize and how to play. 2U actually was easy and the shining star in my day. I love having Mommas and babies and 2 year olds over. I love therapy that looks like play.
Today we were a Butterfly.
When I think of Greyson’s Autism…I think of rainbows, not a puzzle piece. I always liked puzzles growing up. I always hoped we could complete one and my Mom would ModgePodge it together so we could proudly hang it on our Living Room wall.. I remember dumping the brand new box out onto the kitchen table…the tickle of cardboard dust in my nose and the smell of paper pulp in the air. I would diligently search for corners and edges…Examine the color photo with conviction…. Satisfaction for a job well done with each placement of a piece in it’s home. The picture would come together slowly, piece by piece. And finally-- by about day 2 we were over it. Pieces would inevitably get lost. A dog would eat one. We had to move the puzzle from the table to the counter so we could eat dinner…and in the transportation- things came undone. And inevitably, the puzzle would be shelved or thrown away.
And that’s how I feel about Greyson’s Autism. There are many pieces. Sometimes too many. It’s hard for me to predict or understand…And medical science understands even less than me sometimes. No one person has all the answers… I think I might be missing a corner…and some pieces have already gotten lost and the picture of what I am supposed to be creating...keeps changing. So I threw the damned puzzle away…
When it rains, the air is filled with raindrops. These raindrops act like a prism. If sunlight passes through the raindrops at the proper angle it is split into its spectrum, which is made up of the colors of the rainbow. Ka-chow.The band of colors is called the spectrum which appears in the order of red, orange, yellow, green, blue, indigo, and violet. Science and God all rolled into one.
Greyson’s spectrum is beautiful, simple, so brilliant it hurts my eyes sometimes…described partially by science and partially by something that is hard for us to understand here on Earth. God and magic rolled into one. He's my rainbow in the rain.
This guy. Bean seeds. 4 weeks old today. A 2U creation.
He was growing by double daily but then just started tapering off and looking a little bit wilty. I think he needs more room to grow. His roots are getting bigger than the cup. And so even though I don’t want to- we are going to have to move him to a bigger home. And while we are moving him- it might hurt him just a little. He may be scared. He won’t know why he has to go. He may be just so focused on the fact that he has to leave that he doesn’t realize he is actually going somewhere better and bigger.
Greyson is getting ready to stop “Early Intervention.” We are working on his IEP- Individualized Education Program. It is mandated by the Individuals with Disabilities Education Act.
An IEP is designed to meet the educational needs of each individual child who has a disability, as defined by federal regulations. The IEP is intended to help children reach educational goals more easily than they otherwise would.
We have to move Greyson from his plastic cup to somewhere bigger….perhaps a garden? I know it will be somewhere better- but I am scared and I am sad. I was just starting to feel like I had our daily plan all figured out... I never, ever, ever thought my preschool "courting" would be anything but sweet and whimsical....not confusing and overwhelming. At times I still mourn the Typical life I left behind.
IEP’s….I heard about them since the second the stork told me I had a kid eligible for Early intervention.. I heard no one advocates for our kids but us, so I am scared…and feel like I must go in with my face painted and armor on…All I have ever heard about IEP's is bad...negative...makes the school look like evil dictators...but my heart is telling me different. And I remember that in any catergory- there are people in life who get validation from focusing on the bad. I am not like that. I feel like everyone involved and working with my Son does advocate for him and us…they do care… In little ways every day they give all they can plus a little extra. I feel like they will give us the most they can- and maybe even a little more- like free rainbow Sprinkles on top….because something about the wavering sparkle in Greyson’s eyes makes people remember him and want to help.
Have you introduced yourself to me yet? Who are you? Maybe you mean to...But think I don't care about who is reading...or maybe you think you need to use some floaty bubbly flowery words because I like to write. Nah- not at all. You can even talk to me like we talk to Greyson if you want. "Me Mom...Me like blog. Chocolate tastes good." Stop by and say hello. firstname.lastname@example.org or Facebook. It's funny, although Life with Greyson (and of course Parker!) has a Twitter account, I know nothing about it. That's all Michael. The other day I asked Michael, "What does pound sign, bunchofwordsmushedtogether mean? And then he said something about Twitter and then something about hashbrowns, and then I stopped listening. If Twitter helps us generate more Awareness than Awesome! (Holly Robinson Peete Tweeted about Life with Greyson by the way!!!) But other than that- I don't get it. It feels like going out to a club in LA when I was single. Loud music, distractions- everyone yelling out their own things, but no one listening to one another. I told you I was old-fashioned. I'm learning how to adapt in today's World. Just like Grey is.
Have a great day, My friend.
Big cyber hugs to you! I love visiting you here!ReplyDelete
I love reading your blog. I do know how change is scary for our kiddos as well as Moms, Dads and Nanas too. Life is like that. Then everyone "gets" the new schedule and we have to move on. I also understand confusion....does Noah fall because he has one eye or because he is three?????? Remember God is faithful and will carry us on the days that are not "easy".ReplyDelete
The IEP process does not have to be scary. Seriously. I like to assume everyone wants what's best for the child and would be more willing to help if they thought they could effect change.ReplyDelete
Thank you for your blog posts...please know we are out here reading them...and tweeting about them.
Your last paragraph made me laugh - you totally "get" people so well. I'm really enjoying reading through your posts (having found you through Momastery)! I've totally been that mom on her phone at the playground reading (your posts) as a mini-break from "Mom-ing" (as you put it so well)l. Thank you! It's so comforting to read someone else's words that reflect exactly what I feel but probably couldn't even articulate. A million thank yous for writing and sharing. You definitely succeed in shining a bright light on autism as well as so much more.ReplyDelete