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sunday still life

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Sunday Still Life is an evolving photo project started by Erin. It’s an invitation to explore the beauty and depth of life through traditional still life composition and / or photos and words to evoke inner stillness and reflection. If you feel so inspired, join in!

This shot right here, well I’m mighty proud of this sprite! That lolly she is holding is her first. She got it as a prize for her first week of potty training at school! Lil bit is holding her own in the 2 year old classroom at school. One of the many reasons we love the school our girls go to is they do potty training in the 2 year old classroom. Ms. Chrystal is the best!  When Zuzu wen through this class I remember after the first few weeks she showed me a potty chart covered in pink star stickers and proclaimed it as hers. I pointed out it belonged to another little girl and which one was actually hers- the one with only 3 stickers. She was upset. But then the next week went to town and rarely looked back.

About a year ago Lovey wanted to get out the little potty so that the Quail could start getting used to the idea. I balked. I reasoned that she wouldn’t be in Ms. Chrystal’s until next fall. But we went ahead and got it out anyway. And I’m so glad we did. Going into the class and her official training she was able to let others know she had to go, to pee and poop in the potty, flush her potty and throw her old diaper away. She’s got a ways to go, she still struggles with not falling over when she tries to undress or redress for it. But I know she’ll get there- and in a fairly compatible timetable as her classmates.

After the first week of “official” training she left friday afternoon with a good dozen stars on her chart and her first “prize”. Way to fly little bird!

Quailday: another kind of happily ever after…

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Do you know Dave Hingsberger?

He’s a strong advocate and friend to a lot of us that find our lives touched by the world of disability. He’s compassionate, thoughtful and quickly analytical. He gets the struggles that sometimes seem inherent in the lives of those that are marginalized by their communities. I had the good fortune of hearing him speak many moons ago as a young social work intern learning my way in the field of disability advocacy. His words touched my heart and stayed with me even though I only saw him a few times and so very long ago.

Shortly after the Quail was born and I found myself repeatedly googling disability issues and reacquainting myself with our modern-day heroes and advocates. I found out that Dave makes himself a willing and daily member and advocate of our community via his blog. What good fortune! What wisdom. I feel so blessed to live in a world where technology has enabled me to have access to wisdom and support at all hours of the day.  Particularly on sleepless nights when my mind is in a race with my heart to beat out worry.

A couple of months ago Dave took fingers to the keyboard to convey the unconventional wisdom found in an ordinary everyday situation- a mom and her teenage son dickering about his right to be independent on a daily basis. His right to the dignity of risk. Years ago, as a young whippersnapper of a social worker living in a liberal community,  I would have read this story, and been rallying around that young teenager. Of course he should get to go get his food in the mall without an escort. It’s the mall, he’s a teenager, teenagers hang at the mall all of the time without befalling dire consequences. Right? Having a disability shouldn’t mean you have to be escorted everywhere.

But sadly, in our world, in this day, those everyday situations can befall horrible outcomes. Not everyone respects people’s dignity of risk or frankly- human life. Some people spend their time making others who have worked so hard to be a part of the community, to be accepted, to at least be allowed to live in peace, live a nightmare- at best. As a mother I hear about these stories and I want to take both of my children in my arms and never let anyone talk to them without first going through a battery of testing of my own. The fear eats at me. The worry of what I can do to prevent any harm befalling anyone tugs at my soul. Why anyone would insist that their right to call someone a ret@rd is more of a priority than the person on the receiving end’s dignity is beyond me. Just because we have the right to say what we want doesn’t mean we have to. I will never understand people defending their right to be mean. It’s one thing for someone to make a mistake, realize it, apologize and learn from it. We’re all human. It’s a diagnosable personality disorder to defend the right to hurt others.

The critics and trolls insist that as parents and advocates asking you to please remove this slang from your vocabulary is petty, politically correct and  an overstatement of the issue at hand. I would say the extinction of Ernie Hernandez Jr’s life is a sad statement to the seriousness of the issue.

Our world is changing though. It’s this fact that restores my faith. The world understands now that people who clinically have the diagnosis of mental retardation can learn. They may learn differently, but they do learn. The term retardation when used appropriately isn’t the issue. The issue is that a wide sect of people use it to degrade others and then defend their right to be ignorant about it. The issue is so significant that even the medical community has decided to step in and revise their language. The correct term in the DSM-V will be intellectual disability.

We can all learn, if we are willing. As a friend, a community member, as a co-worker, as a family member, as a fellow human being I am telling you it gives me pause when you say ret@rd in reference to something you did that you think was stupid. I know you may not have thought about it before. I know you may not have had any reason to question it. Everyone says it right?

Well give me a few minutes of your time and open your hearts and mind and take the opportunity to learn about the history of people diagnosed with mental retardation. Read this. Know the struggles that have been faced and won, and those that still exist. If you still disagree about the significance of the R word, that’s fine. Just as a friend- please don’t use it around me or my family. That’s at least a start.

And as to that teenager and his mother; well, let me commend her and her brave heart. She listened to her son. As a social worker and disability advocate I had no doubts about his rights. As a momma to a sweet Quail making her world in her community, I stand guard to the harm that may befall her one day. And hopefully, one day, I’ll be as brave as that Momma to know when it’s time to let her fly. With the wisdom of folks like Dave, I’m sure I’ll stay the course.

Our language frames how we think about others. Help eliminate the R-word from everyday speech. Won’t you please join me in taking the pledge to end the R word?

The Stisters Autumn Adventures begin…

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The Stisters (Zuzu’s pronunciation) are on the go! It’s the beginning of the school year and both girls are in the middle of transition woes. About a week into the new school  year it dawned on us that maybe Zuzu doesn’t remember any of her other dear teachers other than the one she had for the last 2 years. Poor thing is having a bit of a difficult adjustment. She seems to be doing ok in the classroom, but she has started bemoaning having to go in the morning, sulks into her spot at group time when dropped off and is a bundle of frayed nerves most of the rest of the evening when we pick her up. The tiniest thing- say, a chip falling on the floor, my stupidly bending to pick it up, my not anticipating her exact reaction to the announcement of bedtime sets her off into a flurry of tears. We’re trying to be patient and kind and lowering our expectations for going out and about in the evening for a while until she settles in.

And she will- settle in that is. She’s excited to have a handful of girls in her class and talks about them endlessly. She’s spent most of her first 3 years in classes primarily comprised of little boys and seems excited to have little counterparts that are equally excited to go to dance class with her. When we went to get fitted for this years outfit the girl flitted and twirled her way through the studio. Both her teachers stared open-mouthed at her energy and eagerness. Both indicated that she was quiet as a mouse the year before. It will be interesting to see if once Momma is not there if she’ll continue her enthusiasm or go back to mousehood.

The 3 year old class is a HUGE change in structure from what she is used to though. The kiddo’s have assigned duties each week and by tuesday Zuzu can list off who is line leader, door holder, spoon hander-outer and table wiper. She’s clear on what gets her daily smiley face taken away and quick to point out to her teacher when she’s earned it back. She happily shows me the footprints around the room that demonstrate where the line-up starts for different activities and shows me where her spot is at the table. She’s a good kid and likes it to be known when she does something right so I think in time it will feel less like too much pressure and more like the comfort of orderly routine.

The Quail’s transition into the Toddler Room is going along pretty well too. Lovey and I have both spent some time in the class with her and each of her therapists have taken turns bringing her in and helping her to get to know the structure and routine. She’s definitely looking forward to getting to spend lunchtime with the big kids. This week while she was finishing up her visit the lunches were brought to the room and as they were being handed out she decided to stand herself up at the table to emphasize that it was her turn! Our girl loves food! And on that happy note I’m also thrilled to report that her thyroid tests came back in the normal range. We’ve had a few reports of how tired she seems a couple of times a week and rather spaced out. I was a little worried that it might be thyroid related but that appears to not be the case.

In speech this week she also started saying “pider” for a tune to be played in addition to holding up her spiders. She also pushes her little foot at you if you ask to see her piggies. We’re working on body parts and belly and head and foot are pretty consistent.

Here’s a picture from the first day of school- gosh they look so big!

Zuzuday- apron strings

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Our big girl has made one more BIG step towards independence. It started after our trip back to see the Grandparents. Born out of fatigue as all good things are.

I’ll just say it- we’re co-sleepers at heart. In our house someone always lays down with Zuzu. For a while it was timed to music, or a set number of stories. The coyote chew was put in play to retrieve your arm from under her. There’s a been a variety of versions. In our bed, in her bed, but always with a grown-up laying down with her. It didn’t start out this way- or I should say the intentions didn’t. We made a nursery. We hauled our butts to Ikea and got a shiny new crib with a matching bumper/quilt/mobile and soft art-work collection. We filled the room with soft colors, music, animals and blankies. We made it a fun place to be, and then night-night would come and we would head back to Momma-Daddy’s room. Around 18 months I had set last call for nursing. Then at 20 months we moved her going to bed routine to be one that alternated Momma and Daddy and took place on her bed. For the first few weeks she would wake up and cry and one of us would go in for the quiet rescue. Eventually she figured out life was much simpler if she would just get up and come back to her rightful spot- between Momma & Daddy- and cut out all the middle-of-the-night negotiations. I remember so clearly the first morning Lovey and I both woke to find her between us and neither of us had been the one to bring her in. Well the time came for the Quail to burst forth and I couldn’t quite bring myself to “lay down the law” so to speak. The first night home from the hospital Zuzu sad with puppy-dog eyes watching me with her sister and when I laid TQ down in the co-sleeper she dubbed the room Momma-Quail’s room. Well it broke my heart- mostly because she was being so sweet and understanding about it. So- I did what all tired mothers do (if they’re honest) I said- “Oh-no honey- come lay down with us!” And she was back.

I think because she always had slept with us she was a fairly reasonable bed-sharer. She laid fairly still and didn’t frequently move us out of the way. Well- no- she didn’t move me out of the way. It wasn’t uncommon to find Lovey huddled down about 2 feet below his pillow by morning and her having taken over his side of the bed. The Quail on the other hand- in her co-sleeper, in a swaddle, in all her hypotonic glory could wriggle herself down to the bottom and turn sideways. Middle of the bed was just never a safe option for her. When we would try weekend naps altogether it turned into a giggle fest and no one slept.

So we returned from Grandma & Grandpas this summer and I was finally just too tired to do the routine. So I explained to the girls that we would read books in the living room- 3 to be exact, of their choosing and then they would get to go lay down in their beds with a kiss and a tuck-tuck-tuck! I managed to say it with enough animation and excitement that no one was the wiser throughout the stories and the first tuck and tuck. By the third tuck Zuzu gathered what was up and was a little less than pleased. I explained that she was welcome to come snuggle like she used to if she “happened” to wake up during the night. I’m fairly certain she used my turned back as the cover to set her alarm for 12:30am because for the next few weeks she has come to us like clockwork. I also used the fact that she had been dry all night for the last month as incentive that it was a privilage to get to sleep in her own bed with big-girl underpants instead of a night-night pull-up. She had been asking for weeks if she could wear underwear to bed like Momma and Daddy do- so this  lucked us into a perfect compromise- you sleep in your own bed (or at least start out there) and you get to wear the big-girl underpants! Big girl things and the priviliage of getting them is often the distinction she questions before doing something. “Is this for big girls or for babies  Momma?”

There are still a few tears- hers and mine. I know it’s good for her to have some independence and to be able to go to bed without coddling. I know she can- she does it at school everyday. But I appreciate the sentiment. I was never one to sleep with my bedroom door closed. Growing up it was comforting to hear my family moving around inside the house. We’ve had a handful of nights that she has slept all the way through without us. Those make me the saddest- it’s a sign she’s growing up. But with that comes wisdom and mini-me plotting. Each night as Lovey and I do our own family rustling and readying for the next day Zuzu comes in turn to each of us with a question, “I thought you went to bed! You need to turn off the computer and go to bed! When are you going to go lay down?”

 I smile, tell her I love her with a little chuckle and that it will be soon. Some nights this suffices, others it is the beginning of the “If you give a child a drink of water at bedtime” routine. I’ll enjoy the last days of The Cuddlers while I can.

*And on a side note- along those lines of her road to independence- she can open and close her own car door now and she can work the buckle on her car seat- scary roads ahead as we are now faced with the need for a clear understanding of the law and safety rather than simple child-like compliance with her seatcart (as she calls it!), but oh such a big girl!