Stuff about Tucker

I’ve recently been thinking about where I’m going with Finding Ninee.  I mean, I get that I’m writing for me and for Tucker and for the occasional parent who somehow accidentally stumbles her way here looking for commonality and community in an undiagnosed world.
I started this blog specifically to connect with parents who are raising developmentally delayed children and don’t really know where they fit in.  I made up a place and named it The Middle World and decided that we can all fit in right here.  Together.

Sounds awesome, right?  Right!  And it is awesome.  I’ve met some amazing parents online who share similar and completely different stories about their children (typical and special).

But.  I can’t write about Tucker and his delays all the time.  They do not define him.  They don’t define me or this beautiful and messy thing we call life.

But…maybe I should write about them more?  There’s a part of me that doesn’t really want to get into some of the issues my son has.  As Joy commented on a previous post, writing our fears, worries and panics down makes them more real somehow.

Do I owe The Middle World more information?  I recently read the post “Unraveling” on Our Stroke of Luck and I thought “wow, Kristi.  Look at the pain and worry she feels over her son.  They don’t know so much about how he’ll develop. You don’t know so much about how Tucker will develop.  She had the guts to write about the heartbreak of giving up the dreams of all that Owen could have been.  Maybe it’s unfair that you don’t write about Tucker’s special needs very often.”

Um, should I?  Maybe.  And before you feel the need to reassure me that you tolerate love my stupid drawings and funny posts, and that I do indeed keep you up to date on my son’s developments, please understand that I simply feel a little guilty.  I find amazing blog posts like “Unraveling” because I link up on Love that Max (specifically for special needs blogs) and then I don’t always write about Tucker’s developmental delays.  I’m not sure that it matters, but I can tell you that after reading “Unraveling,” I felt like maybe I should share more.  So that if there are other moms out there like me, they’ll know they’re not alone.

Part of me worries that I’ll alienate the majority of my readers who have typical kids.  Because Finding Ninee isn’t JUST a special needs blog.  It’s a mom blog like all the others out there that I adore reading (you know who you are).  As parents, we all deal with the same annoying shit, like having to play “Chase Me!” games over and over when all we really want to do is lie down and be clever on Twitter.  I’m nervous that if I write too much about Tucker’s issues, that you won’t know what to say.  In fact, I know this happens as I’ve had more than a few friends reach out to me privately saying that they love the blog but don’t really know what to say.  And I get that.  Let me reassure you that there is no need to feel sad for us or sorry that Tucker’s delayed.  It is what it is and I adore him.  Just the way he is.

Tucker is my only child.  I have no other children to compare him to.  Which means that I honestly have no idea whether typical three-year-old kids are able to put on their own shirts.  Mine can’t.  That’s our normal.  I also have no clue how far behind he really is with his language.  If I had to guess, I’d say that he speaks at a two year-old level.

Tucker has some sensory processing issues.  They’re not bad.  He can handle tags in his shirts, hats and some of the other stuff that some ASD kids can’t.  His sensory difficulties are mouth-related.  He can’t watch me or Robert brush our teeth or chew gum without gagging.  We have to hold him down to forcibly brush his teeth.  He’s never been to a dentist.  I know he should have gone by now. I just don’t have the heart to make him experience the hell that it will be for him yet.

So.  Those are the main reasons that Tucker falls on the autism spectrum.  On the flip side, here’s why we don’t have an autism diagnosis, and why autism doesn’t feel like it fits him all the way.  And yes, I know that autism is a spectrum disorder and that “if you’ve met one child with autism, you’ve met one child with autism.”  Before you think I’m just in denial, remember, we have been to a developmental pediatrician who does not think he’s autistic.  Anyway, Tucker doesn’t have gut problems or autoimmune issues.  He doesn’t have problems sleeping.  He doesn’t have intense meltdowns.  He doesn’t mind loud noises, bright lights or crowds.  He doesn’t care whether he has a routine.

Perhaps the biggest reason he doesn’t really fit in an autism diagnosis is because he is SOMETIMES incredibly socially motivated.  He (sometimes) craves contact.  He (sometimes) loves to interact.  He’s not inwardly focused.  During his next IEP, we’ll address this as he’s not getting the social interaction he craves from some of his PAC peers (Preschool Autism Classroom).  At the same time, he doesn’t have the language to interact with the kids in the non-categorized preschool class, either.  It’s weird.  And why we’re in The Middle World.

Although my dreams for my imagined three-year-old son have become a different reality, life’s pretty damn awesome here.  We laugh, we celebrate, and we don’t know anything different.  We don’t know what it’s like to raise a typically developing three year-old.  Because we don’t have one.

 

I love this boy with everything, all the way.

Just the way he is.

And I’m still gonna write about really dumb stuff and will continue to assault your eyeballs with my incredibly bad drawings.