five minute friday: hands

…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.

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Go:

“Quail- do you want to go see your sister’s end of the year show this morning?” Her face lights up as she hollers yes, jumps twice for good measure and starts to tell the baby what is on the agenda. These sisters- they are there for each other. They don’t think about it they just are.

As we press open the weighted door to the first grade classroom I spy Zuzu sitting criss-cross applesauce by a set of desks close to the door. Our eyes meet and crinkle simultaneously as we slip into the full classroom near her spot. We are headed to a therapy appointment for the Quail within the hour and Zuzu’s teacher generously offered to let Zuzu’s group go first for their Reader’s Theater performance knowing how much it would mean to Zuzu that we are there to bare witness. Her group reads “The Fourth Little Pig” and Zuzu narrates her highlighted sections from her paper script. When they finish she rushes back to the area we are seated in and presses herself as close between the two desks separating us as she can manage so that she can momentarily bridge the gap between her school and home life. As the last group finishes up and I reach to the desk to set the camera down I see the girl’s hands entwined under the desk. The Quail’s small hand gently stroking Zuzu’s skinny fingers as she grips the Quail’s leg. They aren’t looking at each other and don’t appear to be otherwise aware of each other. Except they know. They orbit each other unconsciously. Drawing each other into their days and worlds.

This unconscious grace and acceptance, it has been there since Zuzu was first made a sister. As I sat on my rumpled bedsheets in the afternoon light nursing my newborn Quail, Zuzu crawled up to us all doe-eyed cautiousness not wanting to disrupt the nursing she herself held dear. I invited her in and as she joined us I looked down to see her hand protectively hovering over her new baby sisters, expressing more than she was able to say.

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Stop

sunday still life

 

Sunday Still Life is an attempt to capture the beauty and the depth of busy days in a slow and simple way. If you feel inspired, join Erin,  here. Keep it slow. Keep it simple.

She pads into the kitchen at the sound of the radio playing a sweet slow song. Her arms lift up as she looks at me expectantly. I gladly pick her up and we sway for a few beats until I hear the sound of her soft snores in my ear.

Mommaday: those tenderhearted milestones

You know the ones I’m talking about. The first time you see your child, the first time they look into your eyes, the first time they tell you they love you. Well imagine the overwhelming pride and love you feel when that happens coupled by the genetic similarity of both of your children reaching it in the same way. As the parent of a child with special needs you often hear up and coming parents lamenting their fear that their child won’t know them. Will never call them Momma, won’t care for them anymore than anyone else. Well folks. I’ve said it before and I get to say it again. Your child will know you. You will have those tender moments in one form or another. And when you see your children reach it in a similar way, you’ll smile at your unexpected genetic prowess.

The milestone here I couldn’t have predicted, read about in a baby development book or dreamt of involves the first time my dears verbally recognized me as their Momma and a separate entity from them. When Zuzu was about 9 months old and dreadfully sick with an ear infection her fever shot up, as they tend too in the middle of the night. She snuffled quietly as we ran the cool tub hoping it would drop the raising temperature. The moment we set her hot little self in the cool water she shreaked out her very first “MOMMMMMAAAAAAA!” in pure unadulterated anger.

This past friday the Quail and I sat on the kitchen floor with an informal dinner that she was nearing the end of. I had a baggie that contained the 3 left-over chicken nuggets from a previous dinner. She had finished her first and I was reaching in to get the next when Zuzu sidled up and helped herself to the third nugget. The Quail hath no fury, like a woman whose stomach has been betrayed. She bellowed her newly acquired “TOPPPPPP!!!!!” and held out her palm ala crossing guard. When that ceased to make her sister return the nugget, she looked furiously at me chuckling at her outrage and turned the wrath of her palm on me and bellowed clear as day:

 “YOU!!!!! TOPPPPP!!!!!”

 

 

 

 

 

 

 

Yes. your children will know you. And despise you.

Zuzuday- Stister love

 

So one of the absolute best parts of the Quail moving into the Toddler room this fall- is the added togetherness it affords the Stisters. I remember reading the statistics about siblings of kids with disabilities getting 80% of the attention in the home and how that can cause resentment towards the individual with the disability. It worries me, I want them to love each other and take comfort in each other. I want them to be able to have their own independent lives and yet still connect with each other.

So back to the togetherness. We have a young therapeutic recreation graduate student, Miss Mattie that we have come to school to play with the Quail for 45 minutes a day 4 days a week. She reviews and works on the different activities that we learn in the various therapies on the days we don’t have physical and occupational therapy sessions. Miss Mattie will then report back to us about how the session went and specifically what they worked on. We’ve tried to encourage them to go with the flow of what the natural activity in the room is so that the Quail isn’t being pulled away from her pals but having support and learning how to interact with and keep up better with them.  I’ll break here to tell you I’m a worrywart. Well, maybe noone needed me to point that out. But I’ve worried about the Quail’s ability to adapt to a typical school endlessly. I wholeheartedly believe in the power and good of inclusion. But I worry about the day-to-day reality of what it will look like for the Quail and the need to keep my little feathered friend safe, while supporting this inclusion ideal. Part of that is fear based on a stereotype of her disability and potential capability and part of that is just being a working mom to a young child and spending the majority of your day entrusting her care to others.

So, we have Miss Mattie, to give the Quail that extra oomph to fit in and keep up and look out for her. Well, the happiest part of my days in the last few weeks has been checking my email on break at work and seeing the email from Miss Mattie telling me about the Quail’s day and what all they worked on. The absolute best part of the email; though, are the asides that if she was just using the original checklist of activities we gave her we would never hear about. The little moments of triumph and love and community in her day that warm my heart.

So why is this post on Zuzu’s day you ask? Well because we chose to put the girls in the same school, they sometimes share little recess times. Now the big kids playground is next to; but separate from the babies and toddlers playground. There is a fence in between.  This was an excerpt from Miss Mattie’s note on Zuzu’s birthday:

“Then Zuzu’s class came outside and Zuzu ran over to say hi. The Quail was so excited to see her she waved and blew kisses and they held hands through the fence.”

Swoon… I asked the Quail’s teacher to try to get a picture of it if she can since when I remarked on how sweet it was she indicated that it has happened more than once. She then went on to tell me how Zuzu will frequently run over to the fence to check on the Quail and if she’s in the middle of something else and the Quail is crying Zuzu will start hollering to her to get her attention back to her sister. And keep at it until someone comes. I tell you, that girl’s persistence pays off sometimes. The other gem, she’s created an entourage for the Quail. Apparently a number of Zuzu’s friends have taken it upon themselves to line up at the fence and watch out for the Quail as well. I’ve had more than one mother take the time to introduce themselves at pick-up time in order to remark that their child will ask for a Quail of their own and how cute she is.

That Zuzu, she’s a natural advocate. Bless her sweet head.

Quailday: Eye on the prize…

She’s getting there! And Momma may have a heart attack along the way! If you’ll notice she chose to do her first “all-by-her-own-self-pull-to-stand” trick on a slippery surface. I literally stopped in mid air with a quick mental debate to snap the picture when she got up or swoop in for a rescue. You can tell by the quality of the photo that I went with a compromise.

This picture was probably a month ago. In physical therapy we can help her with minimal assist to stand and then play and she’ll stay up for a record 19 minutes to date. She’s definitely getting stronger in her core. Now when she starts her lopey crawl down the hall to us she will manage to stay up on all fours for a stride or two before dropping back down into military motions (army-crawl). Her transitions from one area to another and one toy to another have her spending more time in a tall-kneel and her need to continue a daily read-a-thon have encouraged her to take matters into her own hands and pull up!

Our dear Mattie who comes in to spend one-on-one time with the Quail at her school 3-4 days a week sends us a daily update of how the playtime went and I have to say it is one of my high-lights of each day reading about this little bird’s antics. Be it, sweet, sleepy, naughty, into everything or insistent behaviors. Mattie and her have developed a happy rapport and I really get the sense that Mattie gets what is going on in the Quail’s sweet noggin and has the ability to make the most of it and go with her flow. Today’s note demonstrated her using her newfound strength & language to further her campaign platform for longer storytimes for all children:

“Then, I got out her toys and she wanted her Puppies book. I read it once and she signed “book” and “please” so I read it again and then again. She kept signing “book” and “please” so I put the puppies book in the red toy bucket. She crawled over to get it. She tried to lift herself up but didn’t quite get it so she sat down and I heard her say “doggie” and then she signed “book” and “please” again (Ms. Patty heard doggie too). I told her to go get it and that’s when she pulled herself up. She grabbed the book and plopped back down so I read it to her again.”

Way to fly little bird!

corner view: humor

 

a rousing game of peek-a-boo...

In our home; the range of what we find funny is vast. We rolick with delight in the Quail’s early morning rounds of peek-a-boo, post-kidlet-bedtime-viewed episodes of The Daily Show. Lovey’s Rocks- both Yacht and 30, our favorite modern day Desi & Lucy‘s antics and Zuzu’s newly acquired skill of telling knock-knock jokes. 

Here’s the thing- the repertoire; well, objectively speaking- is sorely lacking. The two-drink minimum dinner entertainment viewed nightly in our home usually starts like this: 

Knock, knock....

Zuzu: “Knock-knock” 

The ‘rents: “Who’s there?” 

Zuzu: “Banana” 

Zuzu: “Knock-knock” 

The ‘rents: “Who’s there?” 

Zuzu: “Banana” 

Zuzu: “Knock-knock” 

The ‘rents: “Who’s there?” 

Zuzu: “Banana” 

Zuzu: “Knock-knock” 

The ‘rents: “Who’s there?” 

Zuzu: “Orange.” 

The ‘rents: “Orange who?” 

Zuzu: “Orange you glad I didn’t say banana?” 

Once we make it through Act 1, Acts 2-6 follow with the banana being replaced with any item in viewing distance. The girl’s got great generalization skills. What can I say? 

That being said- could you help a beleaguered family out by supplying some new knock-knock resources we could foist upon her? 

I’ve learned to cope with Zuzu’s other newly favorite brand of entertainment- repeating what I say verbatim by supplying her with items I like to hear. Early on I learned that just being silent wasn’t enough to redirect the, ahem, behavior . It just made her eyes sparkle more lustrously as she eagerly asked, “Momma, don’t you have something you want to say?” ; then articulates the exact tone of my, “No.” right back to me.  If I have to have my words mockingly replayed, it might as well include sentences like, “Oh my Momma, what pretty hair you have today. Oh Momma, I love you soooooo much. You are just the best Momma ever!” Zuzu usually tires of repeating this long before I tire of hearing it. If only I had thought up this response back in fifth grade when it was every boy’s favorite game! 

Oh- and I’m not joking about the knock-knock jokes…help us out people!