Sunday Still Life is an evolving photography project; a weekly invitation to pause the busy of our days, to re-center and celebrate the beauty and depth of life. If you are inspired to join in, please leave a link in Erin’s comments.
I know, this is a bit literal if not downright silly, but I think this is about as “still” as life gets in our house these days! Actually this was fun. Some cyber-buddies have decided to do a Flat Stanley round and we decided to join in! That’s the Flat Quail to the left and Flat Zuzu to the right. Shortly before they were to be sent off, unfortunately 3D Quail got a hold of Flat Zuzu and pulled her hair, not unlike what often happens in real life. It was a pretty quick fix though and our Flats are off to Kentucky for their first stop. We don’t have much crafting home time here and so while what seems like a simple project ended up taking up most of the day, it was nice to have some one-on-one time with each girl to make their flat. Zuzu was so proud of her cutting prowess as she dressed her in a pink leotard and the Quail was an excellent gluestress! Both girls picked out outfit patterns and colors that seem to embody them as well. Bright, cheerful, patterned and full of their favorite colors. Zuzu wanted to pack a full bag for Flat Zuzu not surprisingly but we ran out of time before we had to get them in the mail. Maybe when our Flat buddies arrive we can make them some treats for their travels!
2. a dry 2 weeks with potty training
3. Emerald Cinnamon & Cocoa almonds
4. a dinner that ended well out after a rough start
5. being ok with not liking Breaking Bad. ick.
6. my clothes put away and the groceries for the week bought.
7. swelling going down in the morning
8. kind words over words
9. a very well organized and helpful email
10. a reminder to be calm
13. kind obs
14. lunch with friends
15. reflux fading with the low carb diet
16. a super-prize earned and a new chart started
17. an upcoming holiday
18. a 5 year old singing about an upcoming holiday
19. ready and excited for our first IEP
20. Pride in our little ones’s testing
21. a 5 year old’s excitement over gymnastics returning
This was a worthwhile treasure hunt for me. I hadn’t kept all of these dear memoirs together. Something about seeing them together again and bathed in the light of our home made me tear up. Or, maybe that’s the something new I’m brewing under my heart. Either way what a lovely little trip back in time. I loved everything about our wedding, what a special day that we were fortunate to share with so many loved ones.
Corner view is a weekly Wednesday date hosted originally hosted by Jane, currently by Francesca. A topic is given and you can see impressions; be it in photographic or poetic in form from around the world: Jane, Dana, Bonny, Joyce, Ian, Francesca, Theresa, Cate, Kasia, Otli, Trinsch, Isabelle, Janis, Kari, jgy, Lise, Dorte, McGillicutty, Sunnymama, Ibb, Kelleyn, Ninja, Sky, RosaMaria, Juniper, Valerie, Sammi, Cole, Don, WanderChow, FlowTops, Tania, Tzivia, Kristin, Laura, Guusje, Susanna, Juana, Elsa, Nadine
I thought maybe I had dreamt it. At 4am, I heard the door creak. Just one creak though, before the pitter pat down the moonlit path started. She came in quietly and asked if anyone was awake. I waited silently since she did not seem upset. “I forgot to tell Smart Cat good-night.” She whispered into the darkness.
“It’s ok. He’s ok. Now go back to bed sweetie.” I mumbled back and held my breath. And then, she did.
At 6am on the nose I heard the creak again and a tap-tap on the office door where I sat typing. “Momma, do you remember when I came to tell you about Smart Cat?”
“I do Zuzu. And then you went back to your big-girl bed and stayed in it all night. That’s one more sticker on your chart!”
“Well, actually, I got up at 5 to go potty too, but then I went back to bed and stayed until 6…”
“That’s good- you made a good choice. I’m proud of you little bug!”
It’s hard to stand tough. I almost caved last night. When Lovey was helping the Quail on the potty. A very tired Zuzu started to cry just a little bit about her having to sleep in her own bed. Then something miraculous occurred to her.
“Momma, will Daddy have to sleep somewhere else when your belly is so big it takes up the whole bed?”
“Um, I guess we’ll see if it gets that big.”
More snuffling tears. (From her, not me over my gi-normous belly. At least not yet.)
“How about you take your pillow from our bed and sleep with it tonight. It smells like Momma and Sugarplum. Maybe one of the blankets I’ve been cuddling…” (can you hear the avalanche starting?)
“And how about Lambie?”
“No, Sugarplum needs something to cuddle.”
“Ok, night-night baby.”
Fortunately, it was Lovey’s night for all things bedtime. He told me when he finished that she looked at her chart after they went in her room and smiled a little at the thought of her new sticker. That was some comfort after seeing her tears. Once again, we all slept until her entrance at 4am. That seemed to rouse the cat though who then remembered she needed to barf and play with the crinkly things under my side of the bed.
Guess I need to make that cat a chart now…
That was written 2 weeks ago. It’s officially been 2 weeks since we have asked her to sleep in her own bed for the whole night. And for the most part she has done it. There was one more middle of the night entrance into our room and she has consistently gotten up to go potty sometime between 5 and 6 am. And her sister has now started waking at 5:30 am hollering to be taken to the potty as well. And on the weekends the impossible length of time between 6 am and 7 am sends her into tears. Other than that, that, that and that. I’d call it a success.
Of course her first “super prize” she decided on was a Valentine item. I worried on that. I wanted to not let her have it before the full two weeks were up, knowing her penchant for future negotiations. But judging by the heart-ie cuteness of this pink bear I worried equally hard that it might be gone and create a very defeated feeling 5-year-old at the end of two weeks. So we compromised again. We bought the bear during our next market run with the understanding it was to live in Momma’s car until she hit that 14th sticker. She did it! And we are mighty proud.
It isn’t without tears, on any of our parts, or seamless; like just this morning, the Quail hollered her “ooo-ooo” warning of impending poos at 5:30 on the nose. And since the last few poos have left me wondering what crawled up there and died, I felt the need to respond quickly rather than risk the need for a full crib cleaning later today. My entrance into their room before 6 am though, of course resulted in a time report from a wide-awake Zuzu. Which was quickly followed by a speech about the need for her to go potty as well along with a lengthy dissertation on all the reasons she likes Momma & Daddy’s potty since the room smells like Momma, Daddy and Sugarplum, which was then followed by an inquisition as to whether the Quail would be returning to her nest for the next 15 minutes. At which point I felt the odds of anyone actually resting were long gone and made the ill-fated choice to allow everyone full-house access prior to 6am. Ill-fated indeed. And a bit reminiscent of the birthday whining from a couple of weeks ago. There was an argument over who cleans up the legos, the dropping of a very heavy book about cats on an unsocked toe. A much-too-lengthy discussion over who should get the ice-pack and who needs to go to time-out for hollering “NO” so vehemently at Momma’s requests for help before 6am. And a final decision to not award the sticker for today’s rising.
In the end Momma needed a time-out and two Tylenol herself in order to regain her morning composure before the day had even really started. As soon as I get a minute to myself I think I’m going to back and reread my oh-so-wise warning about not ruminating on the cranks.
In the meantime, let me just suggest for your own self-preservation that you think long and hard about your status as a morning person before accepting any well-intended invitations to stay in our nest. We’re an early flock here.
Which by the way, did you see that movie, “The King’s Speech”? Loved it. So very good. Especially to a family that has some dyspraxia issues of their own going on!
In the last year, I’ve mentioned our multitude of therapeutic interventions regarding speech on behalf of the Quail here and here. When we last left you there was some concern over helping the Quail achieve “Volitional Airflow”, or her ability to make some noise purposefully. We started with Sara Rosenfeld Johnson’s horn hierarchy last summer. By late August we had a toot. The, um, upper respiratory kind. No issues on the lower tract, her and her sister find deep and abiding joy trying to “out-toot” each other. This fall we had a consistent sound coming out of the “pre-horn” and went ahead and ordered the full set of horns. The 1st horn came fairly easy to her in terms of airflow. So, check, we now have volitional airflow.
We have pretty good oral-motor strength as well. We still do daily exercises, but generally speaking, the Quail is capable of chomping the full buffet of toddler foods offered at her school each day, sans drinks. Last summer’s swallow study had let us reduce the thickness of her liquids with the understanding that they must still all be consumed in a cup with her therapeutic straw. If it was cold, then half-nectar thickness would work, if it was room temperature than we are to stick with nectar. We typically mix the drinks up ourselves at home and send them “pre-thickened” into school. It’s just easier for everyone that way.
Last fall we visited the cyber-home of Lisa & Sheridan and became enthralled with their apraxia links and videos. When I watched Sheridan talk, I felt like I was seeing a future Quail. We noted the tools they use to help him with his speech and asked our local SLP to look into Kaufman Cards for us. Since they carry a hefty price tag we wanted to be certain they would fly with our bird before a formal purchase. Generally speaking though, learning by flashcard is the Quail’s go-to for new skills. Our SLP borrowed the local school district set and we started practicing. We then started generalizing the skill to the books we look at routinely. Instead of asking the Quail to say a given word, we started asking her to say an approximation of it with the sounds we know she has already mastered (mostly vowels).
I swear it was like a light-bulb snapped on as her face lit up and she happily chortled back the sounds we were asking for that she already knew she was capable of. It was the first consistent set of vocal imitations we have been able to pry from her.
So what does this look like for her? Take her favorite Dora the Explorer Halloween book. When we flip through it, I’ll point to an object. Previously, I would have said, “Look at the ghost! Can you say ghost?” To which she would have done one of 5 things:
1. Remained silent
2. Thrown the book
3. Shook her head no
4. Gotten up and walked away
5. Smacked me with the book or her hand
Now, after learning about asking for a speech approximation that she can be successful with, instead I’ll say, “Look at the ghost! The ghost says, “booooooo!” Can you say oooooooooo?” And this birdy- She grins and belts out, “OOOOOOOOOO” and cheers for herself.
That folks, is a little bridge of understanding between us and her. So since this discovery we’ve been using the skill wherever we can.
That all began last October 2011. While she may not hit the target dead-on, she’s been picking up her bow and filing through a steady quiver of arrows. Over the weekend, Zuzu was so delighted in this recent development that she decided to institute doorway passwords. I heard a door close and the Quail go toddling up to it hollering her usual “Da,Da,Da” request to be included. Then I heard Queen Zuzu say, “Nooooooo….if you want to come in, say yellow.” Without missing a beat the Quail whispers her best “ye-yow”. Zuzu then says, “Say raisin!” to which the Quail whispers, “Sai-sen”. Zuzu adds for good measure, “Say Oval!” That tolerant birdie, whispers “Oval.” Zuzu, who at this point has got to be aware one of the grown-folk are now headed to intervene, adds a final, “Say apple!” to which the Quail says more forcefully as I’m about to open the door between them, “affle!” An odd assortment of words? Um, yes, not entirely clear why these words make it out, and seemingly less complex ones are beyond reach, but thrilled none the less to add them to our regular calendar of dinnertime topics! Queen Zuzu has really been instrumental in drawing little words from her sister. If Zuzu asks her to try to say something, the Quail beaming from the attention of her hero, happily complies.
Then on the night of November 21, 2011- my dear Quail, well she said something so heartwarming I swooned and tucked her in close. I know it was prompted, but after 2 years and 9 months of regular prompting- the first response is still oh so sweet. It was bedtime and as I hugged the Quail close, I whispered in her ear, “Night-night, Love you- say ove ou!” and I felt the breathe of her little words on my neck, “ove ooo”. Swoon…..
The other bittersweet happening over the new year is her clear articulation of the letter m. I know they say m,p and b generally come first, but for her that has not been the case. After months (since last May to be exact) of practicing our girl can say mmmmmm. Which happily has enabled her to say, “Momma”. Sweetness right? The bitter part is this happens to coincide with a round of separation anxiety, which amounts to morning departures that are amplified with the pitiful wailings of, “Momma, momma, wahhhhhhh!!!!!” as I head out to work in the morning. Sigh. Fortunately her oh-so-resourceful Daddy has turned morning time departures into a gathering of well-wishings full of kisses, hugs and cheers for a happy day to each of us and that seemed to quell her anxieties.
As I mentioned, the order in which she’s learned her consonants has been odd. She can do an approximation of almost the entire alphabet consistently now with the exception of P and B, the ones that should have come first. P and B have been coming out as a lip-smack-kissy sound until this January 2012. We’ve tried a multitude of approaches to correct this including the Apraxia shapes that gave us the sound mmmmm, ooooo, ooohhhh and ahhhh. But our bird would just kiss on the P and B shapes. Fortunately we had a program plan update planned for January 2012 with Sara Rosenfeld Johnson. Since Sara last saw her in May 2011, she has also improved her lip closure and rounding for function and now has adequate tongue retraction during function and at rest. Essentially, despite her difficulty with clarity she has become more willingly chatty. Despite all of the noted improvements p and b remain somewhat elusive to her. And as charming as her kissy version of them is, we have been mystified as to how to correct it.
I know many folks in the Ds community think that we are over-analyzing her difficulty talking. That it is just the Down syndrome itself causing the delay. The literature says that expressive speech is not fully articulated till closer to 4-6 years of age. And our bird doesn’t turn 3 until the latter part of February 2012. The problem for us is that the Quail seems to have lost speech in the last year. The Down syndrome literature does not say anything about that. And throughout all of our IFSPs our EI has always said when she starts to slip in an area then we need to consider why that is. In every other developmental area the Quail has made leaps and bounds, either maintaining her developmental age range or in the case of cognitive, social and self-help leaping up a few months. Speech is the one area that has slipped. So we’ve talked with our SLP and with SRJ about the possibility of apraxia being the culprit. Her receptive language this fall measured 98 on the PLS 5. When you remove her sign language from the expressive equation her score dropped from 82 to 77 giving her an overall total language score of 89 with sign and 86 without. Sara felt that this drop was not significant enough for a full-fledged apraxia diagnosis when we saw her in Jan 2012. It was concerning that her receptive is outpacing her expressive. Since she now has all the other necessary components for expressive speech we are left to think that her severe motor planning disorder is manifesting as a speech dyspraxia. This makes sense as we think back over how her other developmental skills have developed. She generally has a great deal of difficulty performing any given task (crawling, walking, signing, feeding herself, playing with toys) until she’s been able to go over the act in a repetitive fashion for a number of weeks to months. Once she has it firmly under her belt, we don’t hear complaints, tantrums or refusals from her anymore.
This girl knows what she knows and also what she doesn’t know and let me tell you, she does not want to be put on display with what she doesn’t know. And frankly, who can blame her? Do any of us enjoy that?
So in January at our PPU with SRJ, we explained how perplexed we were over the P/B mystery. Sara watched us practice the first horn with her and immediately noted that although we had her blowing it up to almost 25 times in a row, we weren’t removing it from her mouth between blows. She needed to do this in order to move her mouth in the proper way to get a p or b sound out. She also gave us a new activity with our z-vibe and the yellow spoon tip (hoping that the yellow color would eventually generalize her back over to the yellow apraxia shape) that was both fun for her and silly. We would turn on the vibration and utter a “b” sound as we tapped it on her leg and arm working our way up to her lips where she could purse them on the spoon and then produce the sound herself. I tell you it was like magic. I would say it was within days of this correction that we started hearing her attempts at quiet little b sounds. Now she giggles and tells us which leg to start the z-vibe on. She doesn’t always produce the b sound, but her consistency is growing. For now we are focusing on the B.
That’s the long and short of it. Since this burst of inspiration we’ve also started adding her school buddies name into the fold of dinnertime conversations asking if she has played with one child or another that day. You can totally see her eyes light us as we make our way around to her favorite, “Mariah” as she grins, giggles and utters “Ry-a”!!!! Now as to whether her and Mariah played nicely or met in Thunderdome that day, well that’s a story for another day.