Growing up…but not…

29 May

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.






12 Responses to “Growing up…but not…”

  1. steevbeed May 29, 2014 at 2:45 pm #

    My ‘little man’ is as tall as me now, he was 15 last week and everything you have said resonates. Transition to adulthood is our next challenge, if we all manage it as well as we coped with the other million-and-one challenges we’ll make it. Let her sit on your lap, what harm can it do if it helps Maura know you love her. good luck with the battle picking.

  2. Joy M Newcom May 29, 2014 at 3:00 pm #

    Extremely well expressed. Thank you.

    Just yesterday I realized how I’m not the mom calling up a pediatrician for help anymore. I’m the guardian (still mom) of an adult man trying to get him in to a doctor of adults on short notice (passing a kidney stone through a jimmy-rigged, surgically so, urinary tract). Our doctor “friends” at Mayo would have fit him in. Too bad they are hours away. If he were still “little” and not mid-20s, he’d have gotten in to see his pediatrician. I’m confident of that. Her nurse still took my call, but … we have clearly ventured into the land of adults with disabilities. All cuteness gone. What we moved through from 6 a.m. to 2 p.m. was adult with disability purgatory. And, yes, I cried, but only a bit. I had to get him through passing his first kidney stone (that was all of our hypotheses). It just so happened his body took care of things as I was loading him into our van, bags packed, for a trip to the ER, aka, the land of no one who knows us. As he was moving from wheelchair to van seat I heard, “Momma, it hurts. I have to go to the bathroom. Now.” So back inside we went, keys left in ignition (not running, thankfully), purse and medical supply bag in the front seat. Sure enough, he felt better after his cath. Best of all, I had evidence (in a cup) that life was getting better.

    Adult with disability purgatory. I don’t like it there. I’m not sure I will like ever leaving purgatory either. It might be too much like hell.

    Thanks for continuing to write. I used to and don’t much anymore. I’m getting tired of trying to find the words to explain. You do it very well.

  3. Carolyn Peterson May 29, 2014 at 3:03 pm #

    My daughter is going through puberty….need I say more. 13 next year..almost as tall as me. And I’m 5’5. Where did my baby girl go?? Love your blog……

  4. Shelly May 29, 2014 at 3:18 pm #

    So true…..we are in the same situation….. Really love your writing …..

  5. Joan Klobnak May 29, 2014 at 3:21 pm #

    She is so beautiful! Hang in there mom, you are so strong and you will do what is best, just as you always have!

  6. lyonsroarforgod May 29, 2014 at 4:59 pm #

    I love your writing….your love and honesty shine through and encourage others.

  7. saracvt May 29, 2014 at 5:00 pm #

    I know. It’s happening to us, too. The other day Olivia broke down in Izzy’s from a combo of tired, meds running low, and too loud. As she writhed on the floor, crying, yelling at me–an 11-year-old with nothing more apparent than messy hair–I felt everyone there stop and stare. Especially a group of older ladies who positively glared.

    Or when Maddy takes her plushie friends with in a grocery store, people eye her twice. And it breaks my heart.

    But what REALLY worries me is, since they’re both reasonably high-functioning, they spend some time in mainstream classes. I can just imagine a neurotypical teenage boy whispering, “If you really love me, you’ll do it…” And Maddy would, instantly. Olivia, it depends. She either would because she wanted to or beat the ?&$! out of him. In either scenario, we have a problem. And Maddy–dear, sweet Maddy, my Candy Girl–how do I protect her from herself?

  8. saracvt May 29, 2014 at 5:05 pm #

    Oh, I meant to say that sells MLP leggings that I bet Maura would go wild over. Maddy did. And our girls are tall enough to wear them now. 🙂

  9. Denise May 29, 2014 at 10:02 pm #

    You nailed my fears. I once told my mom that I worry about the day when Christa isn’t a cute toddler-looking kid, but an adult with weird behaviors. She had her first gyno appointment last week; the doctor seems great but she is a peds gyro so eventually we will need to transition to “purgatory” as another mom commented. Christa is still my baby and she too still wants to sit in my lap, only she tops the scale at 200 and so do I so I’m fearful furniture will give out under pressure. I miss holding her like a baby, especially since developmentally she ranges from toddler to preschooler. MACY’s has a junior brand called Material Girl and they’ve got cool patterned summer leggings, thru size xxl, on sale for $6.99! I bought 6 different patterns for my girl.

  10. Jan Ehrmantraut May 30, 2014 at 10:01 am #

    I cannot imagine the depth of your love, nor the height of your challenges, but am deeply grateful to follow your blog. In the long trek of trying to find a name for Maura’s condition, has “fragile x syndrome” ever been mentioned? I had a parishioner whose son is in his 50’s, and only in the last ten years was that diagnosis found to be as close as any to his challenges.

  11. Grainne May 30, 2014 at 10:53 am #

    Can I ever identify with this post. My son is 10 this year and is in the same boat. His body is maturing while his mind and emotions just spin chaotically. I also look at adults who have disabilities and wonder what Colt will be like then. You’re so right that it’s much easier when they are little ones….people excuse things for toddlers that just don’t fly when they’re older.

  12. Wendy Carroll June 2, 2014 at 10:31 am #

    My little boy is now 24 years old, 6’1″ and 220 pounds. It doesn’t seem possible. I often can’t MAKE him do anything and have had to adopt an new way of persuading. I anticipated the response of strangers as my little boy became a man who behaved like a little boy. What I did not expect was family not being able to make that leap. It was painful when I realized my son’s aunts, uncles, etc. got tired of the delayed development. When my son was 14 there seemed to be a collective “okay, you’re a teen now. Get over this behavior and grow up. We’re tired of it.” Except neither my son nor I COULD get over it. This was the greatest surprise and most painful betrayal of all. I spoke with other parents who had children slightly older than my son who had the same experience: our children’s behaviors were acceptable when they were small but totally rejected as adults. I finally had to “have it out” with the family and let them now how things were and how things would be – always and forever. And no amount of wishing it otherwise or weariness at behaviors repeated for 30, 40, 50 years would ever change anything. It’s been difficult. I wish I had been prepared for it.

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