Thursday, June 15, 2017

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!


------------

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.


------------

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!

------------


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! 




4 comments:

  1. L said 'mama' much later than many other words. It was discouraging. Now I sometimes miss the time when he wasn't constantly calling for me.

    Based on what you've mentioned, the potty training protocol doesn't sound all that different than what we did at home with L. He ended up only being naked for 2.5-3 days, but we blocked off a 5 day weekend for it! You've been through this before so you know that "trained" doesn't necessarily mean "done with diapers completely" or "never going to have an accident again", but by the end of our long weekend, he had figured out the process and consolidated his peeing. I imagine there are different challenges particularly around muscle control for kids with Ds, and I hope their protocol works out for you!

    ReplyDelete
    Replies
    1. Not entirely... and yes, you're correct - one challenge is muscle control for kids with Ds and second, communication; Hannah does not tell us when she needs to go... so that IS different than Nora’s training.

      My second class is tonight so I’ll be curious to see how it will differ!

      Delete
    2. (I meant “Yes, not entirely different.” : )

      Delete
    3. FWIW, I was really happy with this method, though I was super touched out after a couple of days of having a naked toddler butt rubbed on me.

      Delete