My Developmentally Delayed Boy Works Hard

It being Thursday came as a surprise to me more than once today, which is not necessarily unique. What may be unique is that I’m continually startled by my surprise over what day it is. As if by now, I should have mastered knowing that I’m always a bit behind and overwhelmed and let’s face it, scatterbrained.

On days like this, I feel like a confused character in a book – a ditzy librarian lost in her own snuffly world, wearing a cardigan, a lopsided skirt, and shoes too comfortable to look good with any outfit. I picture her startled eyes, blinking and confused behind glasses. I can see that it is indeed Thursday escapes her completely until BING!

“Right! Thursday then! Monday was a holiday, Tucker was sick on Tuesday and Wednesday… Thursday!  Right. It’s Thursday.”

While busy, overwhelmed, and finding myself wondering where the hours and weeks have gone, I can’t really say that any of that’s due to a string made up of hard days spent working. Obviously, going to work and being a mom and remembering to be a person and wanting to be a writer feels overwhelming and occasionally like something close to panic while wondering how I’m ever going to get all of the to-do’s done. But, it’s not like I’m a landscaper who digs and plants and grows real things in the summer heat and humidity, or a road worker who stands in hazy asphalt each day making it so that we can get from home to swimming lessons more smoothly. You know, it’s not like I’m really putting in a hard day of work.

So instead of talking about what a hard day of work looks like for me, I’m going to try to capture what I imagine it looks for my developmentally delayed little boy, who is five, mistaken for eight due to his height, and filled with the biggest light and hope and hard work of anybody I know.

TUCKER:

We’re in the car to sign up for my birthday party today! I know my birthday isn’t until July but my mommy said that we could have a party early this year so that people can come, because I went to two birthday parties already and I want to have one! I ask my mom and dad for presents when we go to Target which has a circle sign that is red and looks like a target for a bow and arrow. Mostly they get me a present and I put it in a huge birthday bag because I want birthday presents for my birthday!

I know mommy is nervous about the party and whether people will come and whether it will Be Okay. I’m having a swimming party with an obstacle course and a bounce house even though I don’t know how to swim after taking lessons for so long with Mr. Steve.  I think I can almost swim because when he throws the rings to the bottom of the pool, I claw my way by holding on to things and to Mr. Steve and I get them and I can hold my breath but I can’t get to the edge of the pool from the middle by myself which is the only thing my mommy has said she wants from these “damn lessons.”

I work hard at school. I learned how to say “ELLLLL” recently and now can say “Lowwipop” and “LLLLIKE” and “LLLLOVE” which mommy thinks is super-cooLLL awesome and she kisses me which is kinda for babies but I like it when she jumps around and says “GREAT JOB” and rubs my head and tries to kiss me even when I tell her not to.

I work hard at speech class and I love speech class. My teacher is lots of nice (“lots of” means more than a few because I asked) and she gave me a smelly but not stinky sticker for my hand that smelled like cupcakes this week when I did a good job on my project and tried to make a new sound.

Sometimes, I get confused by my old sounds and my new sounds and I don’t know why that boy named Nico on the bus was mean to me because I’m already in speech class when he said I need to be in speech class. I didn’t like it when he pushed his head into my stomach too hard and it hurt and I didn’t get it and I love speech class so that wasn’t mean but mommy and my teachers told me I was So Good for telling them. I don’t know why Nico hit my tummy with his head because I love speech class and I work hard there and am so proud. But I’m not happy that maybe my friend on the bus is not my friend so I won’t sit by him anymore. The bus driver told me to not to.

I work so hard at making my Legos and I am really a Master Builder now, like in the Lego Movie but not really that good because I’m still a little kid. I’m going to be six soon though and I’m pretty sure that when I turn six, I will be knowing more about being a Master Builder and I like the Lego Blasters and light sabers and guns the best even though that part makes mommy make her sad face sometimes, because girls like flowers and trees I think. Even more than girls like Star Wars. I work hard though and mommy and I do battles with them and I am mostly the winner.

***fin***

MOMMY:

He does work hard. This little boy of mine didn’t really speak three years ago when he entered Preschool Autism Class. Today, he makes up games and creates crazy funny dialog between Lego characters. While I no longer think that the word autism is perfect for him, he has speech and language delays, and is thisclose to the spectrum. We’ll learn a lot more this summer and over the next year, as he’ll be taking more tests and evaluations. I have to say that I’m glad that we waited.

Just over one year ago, I was convinced, 100%, that Tucker has autism. So much of the spectrum was in our home and in our hearts and in his behavior. Today, though, I’m less sure… he’s highly socially motivated, and well, we’ll see.

I think it’s important to remember that parents of special needs children celebrate milestones differently than parents of typical children do. But that doesn’t mean that they’re sad, or that the typical parents need to feel sorry or feel pity for those of us living our normals.

We’re all just living our own normals. Life in my house is life in my house, and it is beautiful, frustrating, messy, crazy, fantastic, awful, and just life, with all of its faces. Same with yours. So before feeling sorry for our special needs kids, know that they’re just our kids. Accept them the way that you assume that we’ll accept yours. Adorable. Annoying. Treasured. And all of the betweens.

*** This has been a Finish the Sentence Friday post, where writers and bloggers gather to give their own takes on the week’s sentence. This one was “After a hard day’s work…”
Hosts: Me, (Kristi from Finding Ninee) and our co-host Michelle (this week’s sentence thinker-upper) from Crumpets and Bollocks.