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?

Gratitude: For Lovey on Father’s Day

1. your patience

2. your tenacity

3. your ability to remain non-judgmental and get the feel of people, places & experiences for what they are, not what someone tells you they are, or what one might pre-judge without really knowing

4. your thoughtful soul

5. your creativity

6.  your wackiness & deep appreciation for humor

7.  your renaissance spirit

8. your sentimentality

9. your genes

10. the pure trueness in you

11. your way with yeast: pie-crust, home-brew, donuts, beignets, fried pickles and bread alike,

12. your willingness to try anything and keep an open mind

13. your ability to read a manual and then do what it says

14. your kindness to all things living- be it a hop or geranium leaf, a kitty-cat, a firefly or our children

15. your love & earnest interest of all things that came before you be it a newspaper clipping, a wool shirt, a longboard, a deep fryer or 3, the Fairlane, your ancestors, your specs, a flour sifter or the Magic Chef

16. your thrill &  dive-into-I’m-researching-it-right-now attitude with all things that come into advance in our lives, the world and our future

17. your ability to predict where we are going in our lives with your appetite

18. your mechanical mind

11. your family

12. our family

13. your interest and perspective on the community, culture & world around us

14. your trueness to your friends & self

15. your ability to bend with what is needed at a given time, but still not break or lose yourself in the process

16. your culinary sensibility

17. your gentle, tender nature that nurtures our home, heart and family

18. the way music moves your soul

19.your strawberry locks that now don the heads of our little ones

20. your day-to-day, as well as future-minded sense of  and follow-through with responsibility to yourself and your family

21. my luckiness in getting to love and go through life with you.

Thank you- truely…I love you so…

Still hangin’ in there…

All is still well on the home-front. There will be more blogging to come as we sort out new routines. There are lots of little changes happening in our daily days and we’re just trying to routinize them to make sure there is still plenty of me-time, work-time, us-time, them-time, real-life face-to-face time and cyber-time. Lots of laughter, smiles, healthy-hearty glows.

I miss my online time and friends and family that I”m away from. Even those I’m nearby- but still away from. It’s so hard to find that balance of trying to make everyone happy and still be happy yourself, you know? To make enough time for all the necessities and still have time for little indulgences. To keep up with everyone in one format or another. I’m so grateful for technology though. If it wasn’t for all the advances in society there would so much that would have to fall by the wayside due to distance and time. Even with all of these advances it is still hard to keep up with everyone- in-person and cyber. But I’m grateful for another day to try!

More to come soon…hugs, love, happiness and peace to everyone and thing.

Fave-O-Lit Friday: Oz Squad

Dear friends & family;

With the recent onslaught of media coverage surrounding the word retard. Sarah Palin has unwittingly become the Momma Bear defender of all children with Down syndrome. It is important to our families that she be educated in disability history and why it is important that she not politicize THIS particular issue. It is important that she use her public platform to defend people disabilities and help others who will listen to her undrestand that the word retard hurts all of us deeply. That it doesn’t matter who you are, please do not use this word and please understand that it hurts our precious children when you do.

I belong to an advocacy group that works to educate people about Down syndrome. We are sending an open letter to Mrs. Palin- a non-partisan one…- to help her understand how important it is that NO ONE be allowed to use the word & that when she speaks, she represents all of our families and and our children that have Down syndrome regardless of politics because she is such a public figure. Please come join us in reaching out to her by signing our letter.

Thanks so much for your help!


Fave-O-Lit Friday


Dear Mrs. Palin, It’s not ok for anybody to use the R word. Your dear friend Rush included. I know you know this. Please don’t let politics affect your ability to defend your dear little one. Spread the word to end the word Mrs. Palin. Use your power for good. Sincerely, This Momma

PS: I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities

Momma Monday: No neh-neh

So the Quail and I are definitely done with our nursing relationship. It’s been a while since we tried and this weekend I thought I would give it one last try. I hate to think in ultimatums. And I did hold out one last bit of hope that as her imitations skills grew perhaps seeing her sister nurse would inspire her. A few weeks ago we were in declutter mode at home and Lovey asked if I was done with the bottle nipples I was using in nursing practice. I really hadn’t thought about it in a few weeks and it gave me a small pang to admit I was done. But I told him to go ahead and pack them up. Then a few hours later still ruminating on it I went and got one out to keep in my bedside stand just in case. I guess there is still a part of me that sees it as defeat and doesn’t like that.

But life goes on and I need to as well I guess. I need to have some peace about it. I think I mentioned my conversation earlier with Bad Mama about nursing and how she talked me through the fact that yes, the Quail did not no how to nurse, did not have the physical stamina to nurse, had sensory issues related to nursing and we did work through all of those. So yes, she did technically learn to nurse. Now she makes an active choice not to nurse. I know plenty of babies end up weaning early on for one reason or another. For me the fact that my 3 year old is still so devoted to the breast, it makes it hard for me to see that another baby of mine is not so devoted. But I’m sure this is just the first in a long line of life lessons in recognizing family resemblances but allowing for individual differences. The Quail definitely has a will of her own. I can probably credit her sturdy neck tone to all of her fighting  and shoving away from me in nursing practices.

So I’m working on not being sad about this. Or taking it as a personal failure. It’s funny because when I talk to other mom’s about nursing difficulties I would never think to blame them for it not working out, or tell them that they just didn’t apply themselves enough. So why I’m being so rough on myself I have no idea. I’m the first one to emphasize how hard nursing is to a new mom. The Quail did nurse. Our last most successful nursing that happily stands out in my head was during a therapy session after weeks of no luck. She latched on, settled in and nursed with the assistance of a bottle nipple and swaddle but little struggle otherwise. Kathy passed me a note quietly during it exclaiming, “Beautiful!” And it was. When we weighed her afterwards she had taken in a full 4 oz. A full feed, in 20 minutes from a little girl that months earlier struggled to extract a half ounce from me. That is success. It was sweet, it was natural, it was a triumph for both of us. Shortly after that we began 3 months of her being ill, stuffed up and the nursing strikes. We won’t be continuing to nurse but we did nurse. Yes we did.

My goal is two-fold now. First and foremost to focus on a snuggly bond with the Quail. Lovey hesitantly brought up our bond a few days ago. He said he wasn’t sure how I would react so he hadn’t wanted to point it out so blatantly before. But he felt like things had improved with my relationship with the Quail since we had given up our struggling nursing sessions. She responds more brightly, more openly and trustingly to my entering a room. She snuggles is when I pick her up and seems to feel confident in her home on my hip. She pats my cheek and gnaws on my chin. In the morning when I nurse Zuzu before work we have taken to snuggling up together as a threesome on the bed, Zuzu to one side and the Quail on my lap while we read a couple of quick stories. I still get to breathe in the scent of my heartsongs before I have to go out in the world. It gives me peace. It centers me and gives me strength. I’m no longer mentally focused on how to get everyone to be quiet and sit still in a house that is notoriously lively and full of energy just to reach one small part of a self-imposed goal. I’m no longer snapping at Zuzu or asking her to go to another room so that I can nurse her sister. That part of how things had become had always bothered me and hurt my heart as well as Zuzus. The thing I was most proud of when the Quail came home was the kindness with which Zuzu had welcomed her into our little nursing circle. To shove her out was not kind or natural. So ironically the upside of letting go of nursing the Quail is a stronger bond between all of us. And isn’t that bond one of the main reasons we nurse our babies in the first place?

The second part of the goal is the breastmilk itself. I hope to supply it in full to the Quail, first through her first birthday next month. Then hopefully through this cold and flu season that has been so hard on her little immune system. And this summer we’ll begin the transition to whole milk.

I feel good about these goals. They feel manageable.