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Quail day: I’m back…

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I’m back.

Last week- I don’t know exactly how to explain it other than my brain and heart woke up again. I knew this fog I had found myself in was likely- but when you are in the middle of it- sometimes it is just so hard to see till you are nearing the daylight just outlining  that fog.

When we were debating having Sugarplum the thing that crossed my mind was that while well intentioned, the necessary separating of another apron string that happened between Zuzu and I that lasted about 2 years of her young life.  I know it’s biology- a momma’s focus turns inward to grow the little one in her and then to continue that in the first year growing her on the outside during that time when life is still so very fragile. Still as much as Zuzu adored both the idea and fact of her baby sister, we would catch glimpses of her by herself while I laid as still as I could willing my stomach not to heave and then contract. While we spent 45 minutes of every 2-3 hours syringing drops of milk I had just pumped into the Quail’s tentative mouth, while I loudly (and not ironically) demanded quiet from the household so I could beg the Quail to stay latched on. What willed us through this though was the equally apparent sight of Zuzu reaching out her hand to the Quail while they simultaneously nursed, cuddled on the couch and reached for each other through the fence on the playground. They were sisters first as they patiently waited to grow into playmates and friends.

The thought of yet another apron string detaching between Zuzu and I and now that even heartier one between the Quail and I loomed ahead though. And while I knew it would again be as fruitful as it was necessary, the advanced warning of the maternal fog that was about to set in for a couple years duration did little to prevent the overwhelmingness of it.

This past month as Sugarplum has become a bi-pedal little person we’ve been slowly introducing things other than momma milk to her diet. I say slowly because she hasn’t taken to it with much vigor for the past 6 months. She has learned to sign “all done” and shake her tiny head with a fervent “no” and Stanley Kowalski the offerings of “people food” promptly off of her tray. And since she is our baby, and because I’m old and tired, it is so very hard to “outstubborn her” as the good doctor has prescribed. We’ll get there, no doubt, if the Quail has taught me nothing, she’s given me a renewed emphasis on the glory of patience and conviction. But in the meantime, I’ve been slipping more and more cow’s milk into her cups and weaning myself off of my pump, if not her.

This alone has woken me up, to not be so saturated in the momma hormones throughout the day. And then, this past week, it was like my brain sat bolt upright remembering itself. Lovey asked me if I knew for sure what the Quail’s IEP team was recommending for next year. I recalled that the teacher had said she had been speaking to the 4k teacher at the school where the special education program is housed for the county about the Quail and wanted her to start spending some time there and to come to special ed 5 days a week. Beyond that, I knew no specifics. Lovey then decided to send a note to the Quail’s special education teacher asking for clarification. What came back, that was the jolt I needed. Yes she wanted her to spend some time each day there. What was the shocker was it was calendar/math and phonics sessions she felt the Quail was capable of. But that was all.

This moved us to action. I began tentatively emailing our village- cyber and IRL folks who have been there, done this, here in our system and across the country. Lovey did the same, and then one day- he sent me a note after reading what I had said to another mother. He noted how little like myself I sounded- that I sounded uncertain- not knowing what is the right path for the Quail. That in talking about her we need to focus on her strengths and abilities and lead with that because of the prevalence of stereotypes that surround Down syndrome, people hearing about her will latch on to what they already know about people like her- the weaknesses and difficulties and not hear what we are saying about the real her. I have never been more in love with this man. The student became the teacher. These past 17 years of knowing each other- of sharing my heart with him of showing and including him in the world of disability that I’ve grown up with and how we best serve others in their own community, of how we talk about people- well it was ingrained in his heart and mind and he brought it back to me when I was at my most vulnerable, overwhelmed and doubting of myself, my daughter and what I know. What. I. Know. What we know about this individual that is our heart and light.

I may not be well versed in the education system and most of what I know about offerings locally for others that come with an extra chromosome is third person removed, but it included including the child in the less academic portions of the day- very little inclusion- but mainstreaming into the regular classroom for things like lunch, recess, art, gym. Rarely academics without a fight. And here was our teacher recommending the academic portion because the Quail- well frankly she knows so very much.

So Lovey headed down to the local elementary school in our town. You know the one where Zuzu goes? The one where the Quail went for her therapies when she turned 3 and started with the education system before a segregated classroom even existed for preschoolers here. Now public 4K in our state is for children that are “at risk”. There are limited spots and we want one. The 4k teacher willingly told Lovey a bit more about the class. About the fact that in this class of approximately 20 students, there are to date, 7 native languages. The joy of a college town- a very international community. This was sounding just perfect. The Quail- her receptive language- it’s near normal. She understands what you are saying. She just has trouble expressing herself in a typical form back. But this teacher- this teacher already works with that fact, albeit for a different reason, in her classroom everyday. Why not one more?

Lovey asked what concerns she might have about including the Quail in a typical 4k setting. She mentioned that attention span and focus can often be an issue and it can often be overwhelming coming into such a large classroom environment for the first time. We parroted back what we have been told about our bird. She is great with work assignments and therapists have frequently noted the expanse of her attention span. She also is currently in private preschool with 1 teacher and 16 classmates.

“Well then,” came the reply; “scratch that.”

So, this past week, we let the Special Education teacher know that we were not in favor of her continuing at the separate school, in the separate class. There is so very much more to say about the Quail’s experience and the impact it has had on her this past year….and I can and will go on. But this fog that is slowly dissipating, well it means I’m also keenly aware of all the other things around me that were out of sight and mind in this period of growing another little person both in and along side me and they are calling for my energy and attention as well.

Last week when Lovey spoke up on behalf of our bird, our teacher asked what our goals are for her and out of a vault that had been stuck shut- came pouring the expectations for equal rights. For equal education. For inclusion. For the Quail’s right to be a part of a typical classroom and continue to learn just as she has shown us for the last 4 years that she is capable and eager to do. What we know are concerns for her and how we know they have been successfully addressed in the past and can be in a typical 4k setting.

We made a choice 4 years ago to include her in the same typical daily setting as her sister knowing that if we had to move her into more specialized care, that we would- but that she would need to show us that she needed it. Since she came into our lives we have assumed ability, not disability. We have looked at her and known and assumed capability and as she has shown us she needs support, we have sought it out. And she has thrived. She has grown. She has learned.

My girl- she is entering a system that expects her to prove herself in a way that someone not bearing her label and features would never be asked. Children that know what she knows in her head- they would be able to sit down alongside the other children without having to earn their way there. Because in this country- education is a basic right to all children. Except possibly those that have to work a little harder to keep up. Except maybe those that need it even more.

But that’s ok. I was born for this. The generations that have come before me and educated me personally, academically and professionally- my gratitude is with them. They fought to have children like mine have first the right to be born in to this world, then given the medical care to live a life and then the right to be supported in their own homes.

My generation- we are here to continue on that legacy. We are here to show the capability that lies within. To continue to advocate for equal rights. And that begins with a good and thorough education.

I hope this won’t be a fight. Our family will go in to these meetings with the assumption that we are all here to do what is best to educate the Quail. But, we will lead these meetings now making sure the educators know what we know. What the Quail knows.

That this bird, this bird can and will fly.

31 for 21: The End…

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… of October brings an end to Down syndrome Awareness month and our participation in 31 for 21 for the third year. If you followed along; hopefully, you were able to glean a bit of normalcy or ordinariness that glistens in the corners of our extraordinary lives. I know that normal or ordinary is a relative term. That some may have followed along this month still quietly shaking their heads to themselves and offering up a prayer of gratitude for their own lovely lives. I recognize there are families out there that have much more medically complex lives. What’s routine for them, is not what other families face on a daily basis. I admire and feel a great love for these families. For their pure and true love and ability to live in and celebrate the present. It’s funny when people think about someone else’s life they often feel compelled to comment that they “just couldn’t do it” or “wouldn’t know what to do in that situation” or “it must just be so hard”. The reality of it is that it’s hard work to raise any child. You do it because they are your child- whether they grew early on in or under your heart. You really shouldn’t try to imagine yourself in that other family’s shoes. If that became your reality; it would be your shoes, not theirs. It just wouldn’t feel the same. I think one of the biggest dichotomies between having a child who is labeled as having special needs and having a child that is labeled as typical is how we picture the future. For some reason, when we stare down into the face of our tiny bundle one of two things seem to happen. For the “typical” child, we picture a grown up version of them- maybe a better version of whichever parent they resemble and all of the amazing things that may be a part of their future. Once that child bears the heavy label of Down syndrome, we tend to not see our child anymore. The picture we conjure is of a random adult that we may have passed in the mall, who bagged our groceries or some other stranger who is foreign to us. Part of that is not our fault, you have to look for role models to be able to visualize the future, and in the special needs world they don’t come quickly or easily. Society’s view of a person who has special needs is not necessarily a gracious or accurate one. Whereas other superhero role models are rocked in quick images on the television on a daily basis; doctors want the parents to be prepared for what might happen, what is not typical, what is deemed difficult. What you won’t easily find in the books you had been gathering to prepare yourself. I understand why they do it. But I wish there was also some way to routinely acknowledge that in the case of Down syndrome, so many other wonderful little ordinaries have not just been stolen from you. That whether in the end your child is indeed more alike than different; that they will know you, they will do ordinary and extraordinary things. They will bring a great love into your life and bless you with the strong heart of a parent who knows their child and will go to the ends of the earth to help them be all they can be. Just like they would even if their little was only given a mere 46. And now we return to our regular programming.

I know better…

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We’ve talked about this before. Today is a day to spread awareness about the need to rid your vocabulary of the R-word. You can click on the picture above to sign a pledge to stop using that word.

Last year I wrote this:

“But sadly, in our world, in this day, those everyday situations (calling someone a ret@rd) 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 don’t use it around me or my family. That’s at least a start.”

This year, I still feel the same. I still champion the cause of equal rights and respect for all people. This year though…I know better. Courtney’s words, are often funny, silly, heart-wrenching and frankly one of the high-lights of my day. Her words last year on March 1, 2010, well somehow I missed them then. But I hear them now. I feel them in my heart. They empower me, to empower my little birds.

I’m not a confrontational person. I know I can’t change how someone else behaves. I can only choose how I respond and in doing so set an example for the two little sponges who watch me like a hawk to see how they should behave in this world of ours. It starts there. It starts in your heart. It starts at home. It starts in your community.

It’s awareness. Once you have it- you can’t go back. Once you know my child, she becomes the example you have for a particular image or term. She gives you a reason to want to change your mind and know more. She breaks your stereotype. She gives you pause. She causes you to think. Once you know her, truly know her, you won’t make a second mistake of underestimating her and writing her off. Because she’s watching. She’s listening. She’s learning. Just.Like.You.Do.

Respect her and she’ll respect you. Spread the word to end the word. Just don’t say it. It’s that simple.

I know better. And so does the Quail. And so does everyone who knows and loves her.

Corner View: December Holidays

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See what’s going on around the world:

jane – ian – bonnie – joyce – kim – kay – trinsch – ritva – francesca – state of bliss – cabrizette – isabelle – janis – kari – jgy – lise – cate – otli – dorte – b – sophie – mcgillicutty – sunnymama – daan – ibb – pienduzz – kelleyn – ninja – sammi – theresa – cherry b – juliette – shokoofeh – cole – grey lemon – lucylaine – lynn – skywriting – anna – dorit – conny – l´atelier – kamana – anne marie – rosamaría – victoria – tikjewit – juniper – annabel – andrea valerie – merel – soisses – mlle paradis – cacahuete – wander chow – barbara – emily – tally – nadine – don – flowtops – susanna – tania – dana – ingrid – tzivia – lollipop – mari – mezza

Mommaday: I am who I am, or am I?

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Something little made me smile the other day. It was an off-hand comment, but it came at just the right time for an unknowingly-teachable moment.

Every now and then I hear commentary about myself that I’m just so positive, so laid-back, so happy…and it makes me chuckle.

See I want to be like that. I think you make your own happiness, I think you can in theory choose how to react to something big or little. But sometimes you just react. And I’m a nervous person by nature. I get pretty anxious in certain settings and then I tend to ruminate about them ahead of time and afterwards. But, I’m also a pretty good coper, generally I note what situations make me feel like that- and I avoid them! I know some people naturally try to work through their issues and conquer them. I’m generally not a conqueror. It’s not my style. I’m ok with my weaknesses and I’d rather just try to work around them.  I try to think about what matters, and rationalize whether something is worth fretting over or not. Of course if I find that the process to figure that out in and of itself is eating up my psyche- well, then I need to work on it.

At any rate, I was sitting ruminating about something that was bugging me. It’s something that’s come up before, and probably would come up again. And probably would bug me when it does again. Right at that moment that I was stewing about it, I got a phone call and when I told her what I was just thinking about she said, “Well you are the right person to deal with that, you’re so laid-back! I’m sure it doesn’t really bug you at all!”

It was just the push I needed at that moment to get over it, get over myself and move along. Sometimes we just need that little reminder, that others already see us as the person we want to be.

Mommaday: reflections

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The other day both of my girls became suddenly sick. The Quail developed a fever of 103 and Zuzu’s ear suddenly started gushing forth goo. Both seemed to come on suddenly and out of nowhere. That morning we had been playing and planning our afternoon. The first post-nap cries told a rewrite in the script. It most likely was just a bad cold for both. But it struck me how differently the same apparent virus seemed to have settled in to both. The Quail woke up raspy. Which is her m.o. Zuzu with a goopy ear. Which is her m.o. Same virus- two different paths. Both required care- similar but different.

This is a well-worn path for both the girls and us grown-up caregivers. The first year of Zuzu’s life she was sick with ear infections from 7-13 months. They required fairly continuous medication, much missed school, many tears and even more sleepless nights. The first year of the Quail’s life the colds tended to head downwind. She didn’t require as many MD appointments and meds, but did land herself in the ER 3 separate times with two week long hospital stays. After she was released the second time a decision was made to keep her on maintenance breathing treatments throughout the rest of the RSV season. Since then the girls have been fairly healthy. But the season is back and I feel a little tick starting in me worried about how this season will go. The difference being we know better what to look for with both girls to treat them more thoroughly before either reaches the need for a hospitalization. Or so we hope and pray.

So when the cries started; the calls to the on-call MD started as well. The  decision was to start Zuzu’s eardrops and assuming no fever or worsening she could wait to be seen on monday by her regular pediatrician. I went ahead and started the Quail’s breathing treatments as well. The other big difference with the girls- the Quail rebounds faster. When she woke up Sunday morning she was fever-free! Zuzu managed to remain in good spirits throughout the weekend. I think after the last year of dr visits for the Quail she was secretly thrilled to have the care and attention focused on her. She started listing off in addition to her impending ped appointment, the need to go to her real ear dr for the “tooth” in her ear and the need to see a dentist for the teeth she has never had come in.  To be clear- it’s a tube in her ear but she repeatedly calls it a tooth. Talk about enthusiasm.

The other night while I was doing the Quail’s breathing treat (and yes- the reference to it like that has caused a series of requests from her stister for one of her own and the Quail’s giggling through it did little to convince Zuzu it wasn’t a treat in the true sense of the word), I found myself reflecting on how different the girls are in such quirky ways. In some ways they are so alike. Most people will remark what a mini-me Zuzu is- from the smile, to the eyes, to the continuous talking. Her dad get’s credit for the hair, but really- that’s mine too. I have a lock from my infant head to prove it. It’s easy to see the similarity between Zuzu and me. Just watch her pack her bag for the day, or cheer her sister on for her latest milestone, make a grocery list or turn on my Medela PISA when no one is looking.

But with the Quail- I’ve had to look harder. It’s taken till now when her little (and yet so very big) personality has had time to emerge in all it’s glory to see it. Yet in a lot of ways- it’s more basic. Zuzu actively tries to emulate me. The Quail innocently does.

Within minutes of her birth I asked the nurse who had taken her for apgars if she had Down syndrome. The nurse responded, “You know about that?” I knew it was a possibility. Early on I had been sent to the MFM/high-risk OB when Zuzu’s ultrasounds showed shortened femurs and hydronephrosis. I was monitored a couple of extra times but when she was born, no one questioned if her soft markers meant Down syndrome. Four months later she shocked us with a rather dramatic and sudden fever onset that turned out to be a UTI. Most likely a lingering effect of the hydronephrosis we had not seemed to need to remember.

Then along came the Quail. She had the same soft markers. At each visit the OB would suggest I go back for a more detailed ultrasound with the MFM OB. I asked what would happen after that and they said depending on what he found an amniocentesis would be recommended. I explained rather hormonally that with my previous history of miscarriage I had no intention of increasing those risks now. So we would go on with the exam and the next visit a similar conversation would ensue. Eventually the more brusk of the OBs said it was time to go get checked. So I went for the level 2 ultrasound at 37 weeks. Unfortunately by this time she was too big in-utero to be able to complete all of the measurements. And a bit obstinate in moving the way they would have liked to try to get a better view. The one addition at that ultrasound was an absent nasal bone. With that finding we read that only 1% of the population has it without also having Down syndrome. Still when the OB then met with me to discuss the findings I reminded him of Zuzu’s stats and that these weren’t even as severe as hers. He agreed and said he couldn’t make a conclusive statement about whether or not it was Down syndrome. The shortened femurs could just mean she was a genetic match for Zuzu. And maybe she just wouldn’t be overly tall. I had to laugh at that, Zuzu has never been called diminutive by anyone.

After birth the doctors asked if she looked like us or other family members. I don’t remember what I answered. I really couldn’t focus. Those first few weeks when I would scan the pictures for verification of a diagnosis or not I would tend to avoid the ones that looked like Ds. After her final diagnosis came 3 weeks postpartum by FISH Analysis, I wished I hadn’t spent those first few weeks wondering so much about all of it. Ironically the very day the pediatrician called with the news I had finally gotten to a place where I enjoyed not knowing. Not having a label to define what I saw.

I know some parents get to the point where they don’t see the Down syndrome anymore. I’m not there yet. I see it. I know so much about it and know there is still so much to learn. The difference now is it doesn’t matter so much. The Down syndrome doesn’t hurt her. She’s a well-loved little squirt if ever there was one. She has more people amazed by her then the average kid. She’s lucky.

And so am I. When I look at her face, I can’t always see myself in it right away. I still see those lovely blue almonds that sparkle and crinkle up at the ends. I know that it is that little extra 21 in her that causes it. But that little extra- it’s extra me, and Lovey and Zuzu and all of those family members that have come before her. I see the soft slope of her shoulders and belly and know that it’s that little extra 21 that is responsible for her little sack of sugar body that I love to cuddle. Some say it’s that little extra 21 that causes her love of cuddling. I don’t- that’s me. I get to take credit for that. They say that little extra 21 will mean she’ll have to work harder to achieve the same results as other kids her age. And I see it now, how much harder it is for her to learn to sit, to crawl, to eat, to talk. But it’s that little extra of each of us that drives her to keep at it with full-on enthusiasm. She may have to work harder. But the drive that eventually get’s her there- well that’s familial.

She doesn’t have to work harder though to show us what she loves. She is a bookworm through and through, like both of her parents. She loves music like her father. She loves food like her mother. That sweet strawberry lock of a quail’s bobbin- well it’s arguable which of us gets to take credit. She’s strong-willed like her sister. She’s full of wisdom, kindness and good humor. It just takes a person spending a few extra minutes with her to get to see it’s glory. Because right now, she doesn’t shout about it from the mountaintops. But someday she will, I don’t doubt someday.

Some days the labels put on this little girl, they filter out what people are able to see in her. When I look at her tiny face, I haven’t always seen myself so readily in it at first glance. But when I take the time and really soak her in- I see it. I see my heart, my history and my future grinning ear-to-ear back at me.

Mommaday: Lessons I’m working on learning

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So the other day I was catching up on reading Dave Hingsburger. I know, I know- I’ve said before just how much I like the guy and how much I appreciate his advocacy; just how much I have learned and continue to learn from him. I’m repeatedly amazed at how simple and profound his thoughts make the world appear when I find myself agonizingly inarticulate over similar issues.

Here’s the thing- The examples he gave in this post- I was fortunate. I won’t say I never did the things he did as a caregiver- I’m sure I did. But I also had the blessing of his wisdom back then. I had so many teachers reminding me to listen to and respect the words, thoughts and actions of a person with a disability. It was my job as a caregiver to hear them and to help them navigate their world in their own way. There is one thought that sticks with me, and I apologize that I can’t remember who to give the credit too- but there was a time when I worked with people with fairly profound disabilities on a daily basis. We worked to teach them daily living skills. How to unload the dishwasher, dress themselves, shop for themselves, feed themselves. I remember someone wise interjecting during a weekend caregiving stint, that just because someone can do something, doesn’t mean you have to make a lesson of it every single time. Sometimes, it’s nice to have someone get you your cup of coffee. It doesn’t mean you weren’t capable and need to prove that you are learning every single time.

Where am I going with this? Especially since it seems to be the opposite of Dave’s point? That the point is to learn to listen to people. To every person. To put aside the soundtrack in your head of what you think someone should or could do and notice them today.

All people- and here’s the light that just flipped on as I was reading Dave; including the people that aren’t labeled as “disabled”. I’m outing myself here. Sometimes, I’m hyper-critical of Zuzu. Not here, but in the moment, when she’s having a hard time and not behaving like how I think she should behave in a given situation. I rationalize, well she’s new to this earth. She needs me to instruct her. She needs me to tell her we are going to storytime now, because that’s when it is scheduled and you’ll just have to be able to sit still and listen to the nice lady like all the other kids because that’s where good parents take their kids. Even though I see the energy practically bursting out of her. I see that she wants to run and play and not have to answer to anyone at this moment.

I’m still reflecting on this. I’m not suggesting parents don’t owe it to their children to instruct them. I know we do, but we also owe it to our children to let them be who they are. The difference is when the Quail hollers and screams at me and knocks her carefully prepared food off of her plate- I tell her no, but later I will reflect on her strength, her ability to have an opinion and her ability to communicate it so clearly. I make my focus to try to offer a choice next time so she can choose what she wants. I work on the sign for eat and for drink- so next time she wants one or the other she has an easier way to get her point across. Because she has a disability- I expect to have to slow down and learn to work with her, because of how I’ve been trained. Because of this training I know she’ll get there. I tend to not make overarching generalizations about what it means about her capacity and what kind of person she’ll be or what kind of trouble she’ll have or whether or not she’ll grow up to be a doctor some day or not. I know to wait and listen to her and let her find her voice.

I don’t always give Zuzu that same wide girth. If she does the very same action, more often than not, my response is to despair something along the lines of, “Oh no! Not again, you know better than to do that!” And then put her in time out and then later scan my ever-growing library of discipline books for the latest technique to “manage her behavior”.

And don’t get me wrong- I’m not talking about the age dependant biggies here- The Quail- she bites me- she goes to time out. She hits, she gets told no hitting, be gentle and shown how to use her little hand. The next meal we try to be a little more prompt about introducing the choices before she’s so far gone she’d eat her own arm to get a bite of dinner.

But Zuzu, sometimes I forget she is just a little kid. She’s so grown up in so many ways and is the first to tell me what she knows and correct what I think I know. Sometimes I think she should already know more than she does. 

Dave says, “Stop listening to what the stereotype cripple is saying loudly in your head and listen to what the real cripple is saying out loud in the real world. Is it so much to ask?”

It’s not too much to ask Dave. Sometimes we all need reminders. Sometimes we are better about remembering the lesson with some and not others. The listening I think comes easier to me with the Quail than it does with anyone else in my life. Probably because I’ve had so  much practice and lessons on listening to those with disabilities. I guess in some ways I do still group her as having a disability by affording her actions more respect than I do other people’s. I guess what I realize now- is that it’s really time for that lesson to sink in and generalize a bit. If I’m really going to treat people with disabilities with the respect I afford others- then I need to remember to treat others with the respect I afford those with disabilities.  I need to really get the
message that we are all more like than different.

Thank goodness children are pretty darn forgiving.

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?

Gratitude: For Lovey on Father’s Day

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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…

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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.