Growing up…but not…

When you have a child with special needs, when they’re little, everything is easier, more acceptable.  They’re small creatures with soft cheeks and pigtails and still a child. People see them more for the child they are and are more forgiving of outbursts and bad behavior.  They can carry around their favorite toy and suck their thumb and maybe get a second glance, but it’s still okay.

Our time in that realm is ending.  I can sense it.  Maybe because Maura is nearly as tall as me.  It’s part of my motivation to get into shape, get healthier and stronger, because she’s going to be bigger than me.  Yes, that would be my one big complaint about Maura – that she got the tall gene.  Not the short genes, like the older sister she’s eye to eye with.  Or her mother, who she’s nearly eye to eye with.

No, she had to go be the tall one.


I see glimpses of maturity in her, when she is more still – like yesterday morning, when she sat down on the couch, crossing one leg over the other.  She looked so mature, so age-appropriate, and dare I say it?  So normal.  She has these moments, where she’s scrolling through Netflix to find the episode of Doctor Who she wants to watch, or when she’s clothes shopping, and there’s that moment of normalcy, where she blends into life, and if you caught a glimpse of her at that moment, you would never know there was anything wrong with her.

Those moments are fleeting.

We get different looks now, frowny ones, eyebrows raised ones, surprised ones.  There’s nothing that screams “Special Needs!” about Maura at first glance.  Or sometimes even second.  It’s her behaviors, her reactions, her emotions, those are the things that out her as different.  The kinder people will say “Oh, is she autistic?  My cousin’s son’s neighbor’s daughter has autism.”  I don’t mind that really – people try to grasp onto things they know, to understand.  I appreciate the trying to understand part.

Once, years ago, I was in a craft store.  A group came in, and I quickly picked up that they were adults with special needs and their caregivers.  I saw a man, who looked to be in his fifties, come out of one aisle grasping a coloring book, wearing a big grin.  I could feel other customers do that “eye them without trying to look like eyeing them” move, with the slight frowns, the incomprehension of the situation.  But I stood there, and I saw this man older than me, his joy over a coloring book to buy, and in that moment, realized that I was witnessing my daughter’s future.  A future where as an adult, she was still going to gravitate towards childish things.  Where she might need caregivers other than myself to escort her to stores.

I did what any normal person would do – I went home, and cried a little – possibly while shoving cookies into my mouth – to a friend.  Who said all the right things.  Not super-positive, “Oh, you don’t know what Maura will be like by then!” things, but “Man, I can only imagine, that’s gotta be tough”.

It was a moment in time that I never forget, and now, any time I see an adult person acting oddly, I look at them and go “That was someone’s little one at some point.”  That weird person at the grocery store was once a little child – someone’s little child.

And know that someday, Maura will be that adult acting oddly.  Possibly in a tutu, carrying three My Little Ponies.  While trying to steal my cell phone or asking loudly for popcorn.

At a school meeting in Ireland, with Maura’s teacher and the principal of the school, the subject of maturity came up.  How Maura needed to move on from “cute little Maura” to a more mature Maura.  I knew that the principal was absolutely correct, and honestly, that was a goal of ours too.  But it’s been hard, when she acts so childish.  She will often act like a 3 year old, and in return, we treat her as such.  Last week in church, she plopped down on my lap, and I had this sense of how ridiculous it all was, me hidden behind my very tall girl as she sat on my lap.  And honestly?  It was kind of painful, because she’s no longer a light little thing. I decided at that point that super-cuddling will have to be relegated to home.  I can’t do this lap sitting anymore, not in public, on folding chairs or the like.  It just hurts.  It looks odd.  We need to take it down a notch, for her sake and mine.

Besides, Maura is such a social creature – she wants to go out, go to shops, go to movies, get lunch or Starbucks.  I refuse to keep her from all that.  So we need to step it up a notch in the maturity department.  We need to set our expectations higher, for all our benefit.  Oh, I still don’t think she’ll blend well.  Not with her personality, no, that will always be extraordinary.  And really, none of us blend well in this family.  But at least go over the basics of socially acceptable behavior.  We should be able to manage that.

And if she’s a 30 year old in a fluffy pink skirt and My Little Pony tee…well…so be it.

She’s growing up, and like with any tween, I’m picking my battles.