Nora Quote Roundup

This kid... she’s growing fast - physically and mentally. 6T pants for a while now... long & leggy!

Clearly the word “poop” and farts are the cool thing now. The other night she hit Tim with some toots and said “Smell that country air!!” She learned that on a cartoon set in the country and a character claimed the same. Another character pointed out it smelled like manure and Nora asked me what manure was. So there.

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Then within the past week I caught her sitting on a bowl; “Nora why are you sitting on your bowl?”

“I want to catch my farts.” Right.

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Walking Ailo together one evening, she exclaimed, “Ailo, the world is your bathroom! But not the house.”

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Every morning goes the same; Nora wakes up, goes downstairs, gets the tablet to play some games or watch PBS Kids and asks “What can I have to eat?” Which is the same every flipping day - the food doesn’t really change!! It’s mind-numbing.

This week I told her the litany of options [cereal, bagel, granola bar, fruit pouches...] and she got mad at me! “MOMMY. THOSE ARE ALL JUNK FOODS.” What the hell?!

“Well, Nora, toast isn’t that bad for you.”
“Fine, I’ll have toast and [cherry] tomatoes.” Right.
“Nora who told you all those items were junk food?” 
Nora continuously jabs her pointer finger on the top of her head.
“What? Did you remember or just know?”
“NO MOM, IT’S IN MY BRAIN!” 

She was fired up for whatever reason.

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I can’t keep up with the sass & sauce. Enjoy her Mother’s Day video:

Hannah Updates:

Speech: 

Hannah still does not say “Mama.” 

What she does say: 
Daddee
Go
Boyee [her word for dog]
Snacks
Color
Nowuh [Nora]
Papa
Down
Cackuh [cracker]
Something with S’s and a claw hand which means she wants to watch Trolls. 

One of three speech therapists thought she might have a physical issue causing the delay - like her adenoids were causing the problem. This therapist has seen Hannah the least. I was leery of the comment. I followed up with our original ST at the Thomas Center as well as our Children’s ST - both of them did not agree. They just think Hannah isn’t saying M’s yet. 

Just to tick all the boxes, we brought up the adenoid comment with her ENT. Since Hannah really doesn’t snore or have consistently snotty nose, he also did not think Hannah has a physical impediment causing the lack of M-sound. She just... isn’t yet!

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Eyesight

No news here - she had her bi-annual checkup this morning and nothing to report except - keep patching! Wheeeeeee!

Hannah’s new behavior - floor planking.

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Eating & Drinking


Hannah is behind on feeding herself with utensils. It’s a struggle. She just doesn’t care. She’ll eat a few bits [enough to get her heart meds in] then pick up her plate/bowl and hand it over. I struggle with teaching her proper behavior and actually getting her to gain weight. 

Last night I gave her what I thought she’d eat; eggs and toast. She ate three bites of eggs and signed “all done.” I was so mad. I made her sit there while I ate. No Trolls after dinner and no “snacks” - if she wanted a snack, she had to eat her dinner! She was grumpy and turned out to be pretty tired. I think we just have to keep tough with her... she knows how to eat. I just get anxious because her whole life has been about gaining weight. 

I’ve also been thinking we need to get her trained on a regular cup. We’ve been on straws for a while. Hard spout tips are not recommended for our kids because straws promote better muscles for speech. Another item to practice with!

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Toilet Training

The DSAGC informed us all that Cincy Children’s was opening their Developmental Disabilities Toilet Training class to other “needs” - i.e. kids with Down syndrome. A team did a study with approximately ten boys with autism from ages 3-7 years old. After this “intense” training, seven were trained within 7 days. Two were trained within 9 days. One dropped out for timing purposes. 

There are some parents whose kids with Ds have tried this training program without results. So I’m not going to expect an immediate miracle. 

I went for two hours last Thursday night to get an overview. I go back this Thursday night from 5-8pm to get the tools on HOW to train Hannah. 

Three things I’ve already learned:
1. We have to set aside 7 days for the training - ! For real? Looks like Christmas is going to be pee-tastic. 
2. We have to withhold her “reinforcements” for two weeks prior to training - ! She’s gonna get pissed with no veggie sticks!
3. She’s gotta be nekked. 

Looking back, training Nora was easy! She was pretty trained - even at night - before age three. Hannah is a new ballgame - we shall see! 

Link Roundup

Just some links I’ve been reading/watching on Down syndrome.

[The first two are videos - grab coffee or tea when you have time to sit for a bit]

A Mom’s birth surprise:
Bethany Van Delft
*Also The Moth is a great way to hear really good storytelling

Socially Constructing Down syndrome  [TED Talk]

I repeat, we are not “special” parents

I’ve written and never hit “publish” on a few political opinion posts [even though this IS my blog]. A lot of policies could affect our family now with a “disabled” member. Not a fan of Betsy Devos. Not a fan of Jeff Sessions. Not a fan of the possible health care act - specifically as it could affect Hannah down the road. 

Wishful thinking: we had a government who would actually work together [you know like most of us at our own jobs] to find proper solutions - then maybe I don’t have to lose sleep at night. Or read [ as best as I can find ] unbiased articles on these possible policies without getting a knot in my stomach. 

So you can read these if you are curious about where we sit - or not:

My son has Down syndrome. The GOP’s health-care bill scares me to death.

Meet Evan Nodvin

Paul Daughtery is much more outspoken:

The AHCA Is Not Who We Are

I guess we all just want the best opportunities [and equalities] for our kids, right?

Clever Turd

Nora and I were in the kitchen the other weekend. She told me, “Mommy, how do you like your grocery list?” 

:: I give Nora leery eyes ::

Then I look at my grocery list [written in order of the store, of course]:

Nora!!
I rushed the list over to Tim and tears of laughter fell down our faces. 
“I can hear you guys laughing!” She’s so proud of herself.