Mommaday: our regular

While there are many to choose from in our little town, this one has been our favorite from the very beginning. Not just because it is the closest to us, but because it offers the most shade, swinging, climbing and sliding options and the softest landing when you are, say; learning to swing, climb and slide. City folks know it as Ashley-Dearing, in our home it’s referred to as Alden Park, named for a sweet first friend of Zuzu’s we used to see there routinely. This last vist was particularly sweet because it was the first time the Quail was utterly mobile. Zuzu off and independent. Me just grinning, Lovey on his way with lunch. A perfect late morning for a little family.

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: another kind of happily ever after…

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?

Zuzuday: Using your words- or your Momma’s will work too!

“Momma, I’m not pushing my sister!”

“Daddy, I said hello to Miss Patty!”

“Momma, I’m doing a very good job being quiet at the library!”

“Momma, I’m not having a fit!”

“Momma, Look- I didn’t spill my drink- watch me set it down!”

“Momma, I didn’t poop my pants today!”

“Momma, I ate my dinner, now I get a treat!”

“Momma, I told Conner, No biting- teeth are not for biting!”

“Momma, I didn’t poop in the tubby! I listened to my body and said- Momma I have to go poo-poo when I felt Mr. Poo-Poo coming!”

“Momma, when I woke up in the middle of the night, I didn’t cry, I just picked up my Momo, my Dora, my blue elephant, my Horton, my babydoll, my cup of kefir and I just came verrrrrry quietly into your bed and snuggled you!

“Momma, I just waited here quietly and didn’t wake you up!”

“Momma, I won’t cry, or fuss, or run, or scream. I’ll just eat my dinner and hold a grown-ups hand in the parking lot!”

You gotta give her credit- she’s obviously listening. And making sure we’re listening too. I will admit Lovey and I have not been as quick to the draw on the positive reinforcement as we need to be lately. It seems she’s noticing her good behavior and praising herself for us. Thank goodness someone has been reading the discipline books!