Thursday, September 14, 2017

Tonight, I'm not a fan of you Down Syndrome.

Tonight I hate it.  I hate Down Syndrome.  It’s pretty difficult to admit I hate anything that has to do with my children, but I feel very strongly tonight.  

This week Tera brought home a new notebook and an assignment sheet.  The assignment has to do with sight words and it’s from the regular ed classroom she integrates into.  Tom and I were thrilled that she was being challenged to do the same work as the other 1st graders.  Each day there was a different assignment and, had I read it more carefully, I would have planned a little better.  Tonight’s assignment was to write 5 sentences, one for each sight word for this week.  They had to have correct punctuation (1st grade level: capital first letter, spaces, period, etc.)  To modify this for her, I came up with the 5 sentences, intentionally making them as short as humanly possible.  See, I knew this would be a challenge tonight because she had OT from 4:00-5:00, came home, had to take a bath (which in and of itself was a struggle for Tom), eat dinner, and then we had to start the assignment.

Why would I intentionally wait until the latest time possible to do it you ask? Well, we can’t give her a bath too close to bedtime or she gets super wound up (the opposite of what’s “supposed” to happen).  By the time Tom actually got her bathed it was after 6 and since she wakes up around 5am, she goes to bed around 7:30.  She would not have been able to focus as it was since we knew she was hungry.  And we all know as adults how well WE function when we’re hungry…

So we started around 6:30.  She was doing great until about the 4th sentence.  At this point, she did not want to do another one.  We managed to get that one out, but at 5 she’d had enough.  She threw the pen, hit Tom, and then refused to apologize or finish her work.  I took Zoey up to get her ready for bed and Tom took another one for the team and fought the battle.  

In the end she finished the homework, wrote her sorry letter to the friend she hit today (another issue I’m having), but never apologized to Tom.  

So though I’m calmer now, here’s why I hate Down Syndrome today.

I hate that things that might take another 1st grader 10 minutes, might take her closer to 30.  
I hate that she still struggles with writing “b”, “d”, and “s” and apologizes when she gets them wrong.
I hate that she doesn’t know how to control her actions around friends.
I hate that kids don’t want to necessarily play with her because they don’t know how she’ll act.
I hate that Zoey can sleep in underwear at night at age 3, but at age 6, Tera is nowhere close.
I hate that as incredibly proud as I am of what Zoey is accomplishing every day, I’m heartbroken at the thought of Zoey passing her up.
I hate that 2 of her 3 activities are therapies.
I hate that adults, and kids, don’t understand what she’s saying.
I hate that we have to so carefully plan our events so that she’s not overwhelmed and prone to a meltdown.
I hate that I’m in such close contact with her teacher (who we love) because we’re both trying to constantly troubleshoot her behaviors
I hate that she has to wear orthotics.
I hate that she has to have a harness on the bus for her own safety.
I hate that I spend the majority of my waking hours, and many of my “sleeping” hours trying to find new ways to help her overcome the latest obstacle in her day.
I hate that we have to so carefully watch her calorie intake.

I could probably go on, but I’m starting to feel the cathartic effects of getting it all out and I don’t want to reverse the effects.  And so instead, I’ll make mention of what I LOVE about my Tera.

I LOVE her smile.
I LOVE her hugs and kisses.
I LOVE her enthusiasm for life (I’ve seriously never seen a kid so excited by groceries).
I LOVE her ability to love so strongly.
I LOVE that she’s so proud of everything Zoey does, even when she get can’t do it yet herself.
I LOVE her imagination.
I LOVE that she is an incredible big sister with an enormous soft spot for her often stubborn little sister.
I LOVE how her face lights up when she’s doing something she loves.
I LOVE how she’ll stop doing everything to pet Harley Quinn (who incidentally is quite fond of Tera).

This list could also go on forever, but you get the idea.

I love this kid (and of course Zoey) more than I could have ever imagined loving anyone in my entire life.  Which is why on days like today, it makes my heart hurt so much to know I don’t have the answers to the questions on how to help her best.  I research things, I read things, I try things (I’ve recently tried role playing with Wonder Woman and Supergirl to see if that helps her), I worry, I cry, and every day of her life, no matter how difficult, I’m so incredibly proud of everything she has accomplished.  

And if you are lucky enough to be on the receiving end of one of Tera’s fantastic, day changing, perspective altering hugs, you know the power that kid has.  

But shit, I really wish she didn’t have all the other bullshit to deal with….

1 comment:

  1. Hi I love reading your blog. It truly is an inspiration. I have a 2 year old grandchild that has Fragile X. Which in itself is tough because most people do not know what this is. It has Many of the same medical conditions as Autism and Down Syndrome. He does not walk alone, he has a walker to help him, he does not talk, just some laughing and screaming, ( which by the way makes me smile everytime). He intellectually is at about that of a 11-12 month old. He has 4 different therapies a week and has since he is about 2 months old. It is a struggle everyday but his smiles and hugs make every minute worth it. Reality of his condition came last week when he started daycare for the first time. He had to be placed in the nursery group because the childrrn his age would trample all over him. Very hard time. Our struggle is just starting with the looks and the questions. Your blog reminds me that everything will be ok. God has a plan and we are here to fulfill that plan as God wants for our little man. Thank you for letting people you know and people you dont, see a little part of your life to know the struggles are real and you are not alone.