Mommaday: Dear new Momma…

The Quail

Dear New Momma,

 When I heard of your worry over the diagnosis your upcoming baby has received; that they may have Down syndrome and that you are scared,  I had a lot of things to say about the history of people with disabilities and the injustices they have endured throughout time. This morning when I woke up thinking about you again and your worries, I realized this was not the time to try to educate you on the world of disability. I say this as a person who has known and loved people with disabilities my entire life, family members, people in school, people in my jobs and fortunately now my sweet girl. The time will come when you are seeking that history on behalf of the child you know and love in order to be a strong advocate for him. But for now- now is not the time for you to gear up for that. You will know when that time comes. You have already advocated for your baby in the best way you can- by choosing to have him. It is a brave choice. You are having a sweet baby- a baby you will be a better person for having and knowing. Stand with us and let us guide you. Get to know us and the real stories of the real children who have Down syndrome that we raise every day of our lives- do not let others you don’t know fill your head with stereotypes that are born out of their sorrow, their guilt or their ignorance. Those of us in this forum, we have made the choice that you are making. Whether we had a pre-natal diagnosis or not- we’ve chosen to mother our children. No one can tell you what your child will be capable of- but I promise you- your child will know you, will love you, will want to please you, will achieve milestones. He will bring you great joy and you will be continually amazed by the tiniest and grandest things he does. You will get more out of your child by ten-fold then what you put in to him. Maybe a year from now, you will want to know the history, the culture, the great people and forces that have brought the world of disability into a strong place in our world- a place where we have the right to expect equal rights for every human being- regardless of ability. We will be here to help you with that when the time comes. The people who will stand with you and your child- they are strong and good and kind and intelligent and ready when you need them.

For now, you have a sweet baby in you who already loves you enough to make his way here. Turn your back on those naysayers. They are going to do nothing but needlessly upset you- and I promise you their information is not born out of fact and reality- it is born out of fear and a need to justify choices they made—it has nothing to do with you and your baby. They do not know what your child will be capable of. Any child presents struggles, challenges and more blessings then you deserve.


EVERY CHILD deserves someone who believes in them, and for your baby- that’s you Momma. It’s your calling- embrace it. Soon you’ll embrace him. The Down syndrome will not be his biggest struggle, other people’s ignorance will be.


another momma

PS: This letter was written for a very specific someone who was struggling with other’s scare-tactics around her decision to continue her pregnancy after having received a diagnosis that her baby has Down syndrome. If you find yourself in that same situation- know that this letter is for you as well. You can also go here and here for more support, love and information. We’re here for you too. 

Today is World Down syndrome Awareness Day. 3/21; as in 3 copies of that 21st Chromosome. Today is a day we celebrate our beloveds and shout about it from rooftops. If you or someone you love has Down syndrome- well; you are just blessed. Blessed like our sweet family.

I know better…



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 betterCourtney’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.

Mommaday: Lessons I’m working on learning

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…

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?

corner view: Earth Day


Happy Earth Day friends! Let’s make a deal- We’ll do what we can and you do what you can to preserve this lovely home of ours! It’s never too early to start!

Check out Celebrations all around our groovy globe:

jane, ladybug-zen, ian, bonnie, esti, sophie, cele, modsquad,

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: Let’s think about the word special

Stop me If I’ve told you this already. When I was in grad school getting a masters degree in social work my focus was on working with people with developmental disabilities. There was one class I had to take that the special education majors also took. I couldn’t even tell you the name of the class anymore. I’d have to find a transcript to label it. What I remember from that class was a girl who was working very hard to get the point of inclusion and that we are all the same in that we all have unique needs. I know now she really was trying, she was working hard. And now I appreciate that. At the time, I didn’t. During one class, she raised her hand and boldly joined in the conversation, proud of her epiphany, ” We all are disabled.” Hands shot up all around her and I couldn’t help my self. “No, We all have abilities.”

See the difference? While both are intended to be a step further towards enlightenment and understanding and acceptance of all people. Her version still had a negative implication. And as minor or politically correct as you may think it is- the difference matters. And let me stop right here first and say, yes- I do get that at least she got one part of the equation that a vast majority don’t. She got that we are all have the chance to fall into that category, that label, that stereotype. That just because you weren’t born and diagnosed with a disability, doesn’t mean you get a free pass at some so-called “perfect life” free from all hardship. Genetically something could be hiding. Is there anyone in your family that has had cancer, heart disease, a stroke, a mental illness or diabetes? Then yes- you too might be genetically predisposed to one of these diseases. And yes- you may cost the medical community time and money down the road. Maybe you’ll be able to manage it and it won’t have severe consequences and maybe you won’t. That’s yet to be seen. I could go on a tangent here about the diagnosing and eliminating prenatally of Down syndrome and where ethically we draw the line. Is it with people who show genetic markers for cancer, for multiple sclerosis, for diabetes, for blond hair, for a lack of math prowess, for someone who will take up smoking, someone who has a chemical imbalance and is prone to depression,  someone who will sponge off their parents and not make their own way in this world? That list could go on and on. If you think you have a right to life but someone with Down syndrome doesn’t, you best think closely about your loved ones and which of them fall into these other possibly identifiable categories. Now we can see the gene for breast cancer- so do they get to live? Aren’t they are going to cost the medical community a bundle as well?  Mind you- I’m saying this isn’t a good thing- this ability to start euthanizing at such an early notice and making so-called “socially perfect people”. Because trust me- human nature will find another line to draw between those that remain.

But I digress, hugely from todays point I want to make. The Special Education major. Obviously her heart was in the right place. She wants to help people. But to me there was still a thin line of work for her to cross over. She still was looking at people needing assistance at a certain level of any kind as different and negative. The word special, in spite of its definition, in terms of Special Education, is viewed as identification of challenges and how to we work around that. When people refer to a special needs child- they usually aren’t referring to the child who shows an astuteness in math, or violin, or art, or writing. But according to the definition of special- those children would have special needs as well. But with the actual definition of special- and here is where I’m getting to my point of the day; according to the actual definition of special- those children have special needs as well. They have a quality, an inclination, a natural talent, that is readily distinguishable from the larger population. They have an area that their parents believe, if given the proper attention, their child will find great joy in, will flourish in, will do like the natural they are. And so their parents send them to math camp, to private violin lessons, to the Governor’s School for Art, to the Iowa Writer’s workshop, they agree to have their child participate in the schools gifted and talented program so that their little Einstein can have his abilities challenged.  And guess what happens- they do well. They flourish. They learn so much about that area. They do it beautifully and naturally. But wait- it wasn’t just natural- it was a gift that was honed and refined. With the gifted and talented program our tax dollars went to fund because we believe it’s a good thing to help children get ahead. That’s special isn’t it?

And then there are the run of the mill “special areas”. Have you ever found yourself discussing any of the following topics with your other mommy friends either on-line or in person? Little Tommy isn’t sleeping well- anyone know of a good book on sleep? Little Timmy only says 6 words out loud but we are looking up information on signing- they do that at daycare and the kids love it! Little Betty is tantruming- I need to read some discipline books- or anyone have any ideas about what works best? Little Mary is such a picky eater- I make her separate food every night. Do you make your own baby food? Do you make a point to only buy organic? How do you potty train your child? Do you have a child that is allergic to peanuts? What crafts can I teach Bobby to do? How can I teach Molly to site-read? I’m going to home-school- I want to be sure I know what my child is learning- and I want to be the one to teach them. When you go to the restroom in Target does your potty-training 2-year-old start hollering, “Poopy diaper, Mommy has a poopy diaper!”  When you go to a restaurant, do you spend time teaching your child the basics of good manners- not to scream, run, throw food, use their inside voice?”

My point here- is that we all have versions of what we want to teach our child. Often modern-day, information-gathering, read-a-holic mommies and daddies, devour the latest philosophy and trends in the best approach to teaching our children. I do that. With my oldest- Zuzu- who is a newly minted 3-year-old, I have spent the equivalent of a PhD program’s research requirement in learning about her and her development and needs. I have an arsenal of parenting books- from a set of sleep books, emotional development, feeding and nutrition, discipline, health needs, attachment parenting, esteem building, raising a girl and learning to sign and communicate. What are the best toys- developmentally should we just use Waldorf style- imagination focuses, or bright lights and music stimulating toys?  Prior to that when I was pregnant I bought an arsenal of pregnancy books- pregnancy week by week, month by month, natural and high-risk care. Then came the birthing books- natural child-birth, hypnobirthing and c-section preparation. Then came the breastfeeding books, the pumping books- The Nursing Mother’s Companion, The Working and Nursing Mother, The Tandem Nursing books. Then after a few positive pregnancy tests (yes I mean a few- cause of course as you POAS-a-holics understand- if one test says you are pregnant, you best take 5 more just to be sure) along came the sibling relation books and how to help your first child adapt to her new role and know she is still loved and accept and bond with her sister. And of course along with all of these different topics and the technical knowledge I wanted personal stories. So on-line I went to hear what others were going through, what other’s were doing in their pregnancies- the birth forums, the blogs, the essay collections and a little fiction when I could find the time.  I also had 2 miscarriages before Zuzu- so more reading, more learning about how to make an egg stick and grow into fruition.  What caused my miscarriages, what tests did I need to ask for.

Sounds like I considered Zuzu pretty special don’t you think? She had needs, yes. And she is special. I spent an inordinate amount of time reading and researching what the best method for every little inkling in her small world would be. But that’s my personal style. I know lots of well-meaning, loving parents don’t spend all their free time with a nose in a book. And that’s ok too. But that isn’t me. Then along came baby number 2. And guess what- she is special too. And so I read about Down syndrome- about what to expect, about what will come and what it might behoove us to focus on at different stages of development. So I don’t get to be lazy this second time around. But knowing me and my preference for books and learning- it really isn’t any different. Both my children are pretty special. And my guess is if you are still reading this you find your child pretty special too. So aren’t we all more alike than different? Can you see that now?

Some people say having a “special needs child” (in the traditional sense of the word) is so hard and challenging. Well I would speculate that in the glass houses theory of how we are all prone to view others- someone is saying the same thing about your world. Someone is saying, “I wouldn’t go on to try to get pregnant after one miscarriage, after 2, after a failed adoption, after having one child, after it turned out you needed a c-section, after having grown up in an unhappy home, after my uncle had schizophrenia, after I only got a middle-income job, after I lost my job, after my partner was assigned to active duty, after I decided I would rather raise dogs, I couldn’t be a single parent; I would rather go to school, I can’t afford more than one child and staying home. I would rather spend my time doing what I want to do, after meeting my sister’s kids, after meeting my neighbors kids, after seeing your child flinging noodles at the restaurant last night, your child eating cat poop out of the sandbox at the park, after seeing your child eating non-organic mixed meat hotdogs, your child needs glasses, your child died, your child got sick, your child has x, y, or z. I couldn’t handle that. But hey- I can handle my own situation. I am grateful for my own life. Well that’s good. Be grateful- love your own life- but you don’t need to speculate about how you know you couldn’t handle my life. Because frankly- I probably couldn’t handle yours either. Or maybe I could- if it was my life and I was invested in it.

I say all of this because families of children with traditionally defined special-needs children aren’t to be pitied. They don’t want anyones pity. Maybe one day they are having their own private pity party and choose to share it- but don’t you have days that you have a pity party as well? I won’t take the time to conjure up another round of ordinary situations that might be construed as frustrating given the right circumstances here. I’m guessing if you have now read this far along you get the point.

The point is the perspective. The attitude, we become our thoughts. If we think negatively about a particular circumstance in life- then yes it becomes negative. I guarantee you somewhere in this vast world or at some point in time there is someone else in the same technical circumstances but the difference is they rose to what you perceived as a challenge and learned, and went on in life. So we don’t all have disabilities. We all have abilities. It’s how we look at it, approach it, think about it and define it that is the difference between you and me. Or maybe not. Maybe you see it the same now too. Maybe we are more alike then different.

** for a more articulate version of my point in relation specifically to Down syndrome- pop over and visit Miriam and read what she has to say.

Momma Monday- Food and Love Week kicks off

IMG_1853A few of the families have been reminiscing or examining feeding with their baby that has Down syndrome. I had replied to couple of these posts but then realized it was time for me to put finger to keyboard and document our own experiences with this arena. The interesting thing about it for me is when I started to write about it, it was long, and tedious, and I think anyone who hasn’t been in this situation reading it would be put off by the amount of time, effort and struggle that has come along with it when the history is summarized here. But I’m as surprised as the next mom that there is so much to say about it. And yet I’m not. I think it is the examination of such a basic function in our lives that is long. We spend the majority of our day eating, planning to eat, thinking about eating. Especially when the scope of our thrills as a newborn involve how to become bigger. They eat, sleep and poop, God willing. Most of us are don’t need to examine how this eating and nourishment happens. It just does. Especially by the time we are rested and recovered enough from gestating and birthing our babies to actually reflect on it.

I came home from the hospital after giving birth to Zuzu with a feeding plan and a couple of extremely sore neh-nehs. It wasn’t easy then either. But now 3 years later, what I remember is what I see- a happy, healthy, bounding about faun of a girl. Not how we got here. Time often erases the intricacies and intimacies of our life before we are able to examine them too closely. For the most part that is good, it’s self-preservation. It enables us to go merrily on and think about re-creating again.  

The Quail came out 8 lb 12 oz on a frosty Sunday morning in February. A little bit early, but not a little bit light.  She came out with a wail much like her sister and we began the long dance between mother and child of learning to nurse. I chose to have her at the same hospital that I had quite by accident ended up birthing Zuzu at. The Lactation Consultants there are amazing. I spent more time with them after Zuzu’s arrival then with her pediatrician. I was aware how utterly consuming and complicated nursing could be due to multiple warnings from mommas that had gone before me. I was fortunate enough to push past society’s conventions and nurse through my pregnancy with the Quail. Lovey and I questioned the notion of doing this and whether or not we should be actively weaning Zuzu many, many times. This wasn’t a decision we took lightly. Of course you can’t know what’s to come while you are planning for it. Zuzu’s continued perseverence and need for connection and comfort is strong. She loved to nurse and rub my swollen belly during those months. And after the Quail came home she immediately sank into a routine of nursing and reaching for her sister’s small hand to hold while she let down the milk for her. It is truly the greatest gift I could hope to witness.

In the hospital, after the Quail’s arrival, before her official diagnosis, the LC came to work with us frequently. Since I had difficulty with Zuzu, I just assumed it was a similar difficulty of getting her to latch and once we worked through positioning we would be set to go. I was armed and ready to adjust her latch as needed to prevent the trauma to the neh-neh’s this time. I was queued to the art of baby language analysis and ready to respond to her neh cries. I had the LC’s number on speed dial and wasn’t afraid to use it. I was prepped for the pain of engorgement  and had my little weekend warrior ready to nurse it to a comfortable fullness until the Quail could handle the supply on her own. I had my boppy, my Nursing Mother’s Companion, and my trusty Pump in Style Advanced. I was ready for Lovey to do the middle of the night feedings with a bottle and not afraid of nipple confusion. I had a couple sets of supplemental nursing systems and syringes ready in the event of a rough start. But you know what they say- every baby is different. Yes. The truest, purest, most inargueable statement. With all that preparation- both mental and practical, the Quail still had areas I hadn’t known to account for. Long before we received the Down syndrome diagnosis we received a hypotonia diagnosis.

Let me tell you what should have happened in a perfect world. In a perfect world, the pediatricians or lactation consultants that examined her- and there were a couple of each, should have explained hypotonia in lay terms and brought in their OT or SLP that is trained in oral-motor weakness to examine her and start either a referral to someone to work with us ongoing. They should have been weighing her after nursings to notice that she wasn’t pulling any colostrum out. But it’s normal for any baby to lose some weight after they are born and before the milk came in.

In hindsite I can say that should have been the plan. I guess, really, I wish that plan for mommas that come after me. In some respects there wasn’t an obvious problem. Except this. They did say hypotonia. The pediatrician’s that examined her couldn’t say definitely that she had Down syndrome until a karyotype could be completed. But the 3 things that led them to think she had Down syndrome were: 1. her hypotonia, 2. the difficulty she was exhibiting nursing 3. and the micro-expressions we would witness that bore some resemblance to classic portraits of a baby that has Down syndrome. The LC did print out an article about nursing a baby with Ds and the difficulties of it, an email address for a woman who she used to know that had nursed all of her children, including a baby that had Down syndrome a couple of decades ago and a vague suggestions to be sure to ask for an OT or SLP referral from my pediatrician. I went home thinking there might be problems ahead of us but not really understanding that indeed that was a definitive. Late in the afternoon, the day after we arrived, the LC had given a brief warning that if the baby wasn’t able to eat well then we would be extending our stay in the hospital but that it would be the pediatrician’s call when he examined her the next morning. We were given a stock of newborn bottle caps and extra syringes to work with. Fortunately I had a milk supply already established and my colostrum had already began the transformation. On that first day I was able to pump an ounce at a time and began the routine of pumping out what I could every three hours and trying to nurse the Quail according to a feeding plan that gave me a distinct sense of deja’ vu and a false sense of confidence.

It went like this:

1. Pump for 10-15 minutes to get the let down reflex activated and start to establish a good milk supply 

2. Set up a ‘just in case” bottle

3. Undress the Quail down to a diaper and start to wake her.

4. Begin brief oral-motor stimulation exercises such as rubbing the inside and outside of her cheeks,  gums and roof of her mouth for a minute or 2 to stimulate her suck-swallow-breathe reflex.

5. Bring her to the breast and attempt to nurse her for 5-10 minutes trying a variety of positions: cross-cradle, football, dancer’s hold

6. If at that point she has not successfully established a latch and began to draw out milk then move on to another method of feeding her so that she won’t be too worn down to eat. 

7. The choices are SNS or syringe with your finger inside her mouth to elicit the sucking reflex.

8. Repeat process every 2-3 hours.

9. If she doesn’t root, cry for milk prior to 3-4 hours, wake her and initiate the process on your own.

10. Document the number of wet and poopy diapers daily to ensure she is getting enough nutrition. She should have 6-8 wet diapers and 1-3 poopies each day. If you are not able to get that many call your doctor.

There’s alot of guesswork in those first few days of determining wet-newborn- nappies. We did our best estimations and 48 hours after the Quail’s arrival the pediatrician was comfortable with our level of understanding and dedication to feeding the Quail and agreed to send us home. Other then a few new vocabulary words this was not unlike our experience with Zuzu’s entrance into the world.

It took a few weeks due to a computer upgrade and hospital documentation system changeover for us to get the results of the kareotype. Three weeks later after 4 follow up phone calls to the geneticist and our pediatrician’s office, Lovey and I were having dinner with his parents and we received an early evening phone call from our Pediatrician, Dr. Dean informing us that he finally received the Quail’s FISH analysis back and the good news was it was negative for Trisomy 13 and 18 but did show 50 out of 50 cells analyzed a f inding of Classic Trisomy 21. He started down a litany of expected medical concerns that may accompany the syndrome, hyperthyroidism, hearing and vision loss, the need for routine follow up with our newly established pediatric cardiologist for an early diagnosed small to moderate ventricular septal defect and possible pulmonary hypertension; potential delayed developmental milestones and the possiblity of mild to moderate cognitive functioning that can’t really be predicted this early on. Lovey and I sat on the phone quietly listening together and then I asked for a referral to Babynet to get started finding out what services would be available to guide us through the next 3 years. After we hung up, Lovey and I hugged and I did cry a few tears of anxiety. I tend to run towards the anxious side in general.  Lovey went back out to the kitchen to his parents and I called mine who had recently returned to their home in the middle of the country.  I distinctly remember a shift happening in my thought process earlier that afternoon as I waited for that phone call. I had been pressing the doctors to get a definitive diagnosis back to us and suddenly, probably about the same time the final fax was received in Dr. Dean’s office I saw the blessing of getting to know the Quail without a diagnosis attached to her. I had been able to spend a few hours actually grateful for not seeing her through the diagnostic light.

Babynet, our state’s Early Intervention service or Birth to Three provider; called back a few days later to schedule an intake, and a couple of weeks later Jodie came to meet us and the Quail. We told her of our main concern of how the first few weeks of feeding the Quail had gone and how we had not yet successfully established breastfeeding and when she drank from a bottle a fair bit dripped out the right side of her mouth. We related the struggle to get enough food in her the first couple of weeks. We had been spending approximately 45 minutes every 2-3 hours following the letter to the plan.  Our saving grace was that the Quail was an excellent sleeper. So after she ate, whether it was due to her exhaustion from the nursing session, regular newborn sleepiness or the breastmilk jaundice she had for the first month, she always went back to sleep easily.  When Zuzu was home her first week we had done a similar plan but she was mostly nursing and we were using the SNS for a couple of feedings with Lovey during the night so I could rest. During one call to the LC after the first week they pointed out that the SNS was really only for the first 5-7  day to get started. After that point the amount of milk needed with each feeding couldn’t be sustained with the SNS. It was about this point with the Quail as well that feedings were becoming too drawn out for us to continue our current plan. At the end of the first week she was staying latched on my breast and making a nursing motion long enough to look like a full feeding and acting contented mostly afterwards- well actually wiped out would be more accurate. After one day of just having her nurse she proceded to not poop for the next 36 hours. At that point I realized that although she was latching she wasn’t strong enough (the hypotonia at play) to draw the milk out. I panicked and got out my box of bottles from Zuzu’s early days. We started with a Dr. Browns which had previously been the bottle de’jour to coordinate with nursing. It was too difficult for her to get milk out of. After fumbling around briefly with a series of other bottles that were either too difficult or the milk leaked too eaily out of her mouth we settled on a Soothie. She still leaked milk but it was better then the alternatives. She gradually sped up her drinking in the next week and we were able to get 3-4 oz in about 20-40 minutes. I was still attempting to nurse but the frequency was dropping off as my success plummeted.

Jodie referred us to an agency that had a couple of SLPs who focused on feeding issues in newborns and they set us up to come in fairly quicky, still by this point we were 2 months into it. We met with the SLP and explained how long it was taking the Quail to drink, the milk leaking out while she did and the lack of success in nursing. She also by that time had begun throwing up frequently and in what looked like large amounts with almost every feeding. Both immediately after and throughout the following hours. Fortunately she wasn’t distressed or obviously pained by this. Unlike her sister who started reflux meds at 3 weeks due to her pained behavior, arching away from the bottle and tears (hers and mine)  with each feeding.

The SLP’s  first concern was if drinking from a bottle; which is easier then nursing, was causing the Quail any distress. It is common in babies that have heart conditions to have their oxygen saturation level  drop while drinking as well as their respiration rate increase. We started each session with the Quail drinking her bottle while hooked up to an oxygen saturation machine. Fortunately for the Quail she didn’t have trouble with this. The heart condition made the SLP pretty nervous and she consulted with the cardiologist who reassured her that there was no trouble with the Quail learning to nurse.  The other main concern with a lot of babies with heart conditions is their growth rate. And with the Quail throwing up so frequently as well this could have been a major factor. Fortunately her growth has always stayed consistently between the 25%- 50% average on the standard growth charts. For a baby that has Down syndrome and a heart condition and refluxing behavior, that is really phenomonal. We spent the next 3 months with every other week appointments with the SLP essentially doing the exact same thing. I would ask each week about learning to nurse and she felt we needed to get to the point where the Quail would clearly not need open heart surgery to repair her VSD before moving on to practicing that. I continued to ask and she continued to say the same thing. I finally asked outright for her to give me a list of exercises that would teach the Quail to nurse. She said that there weren’t any.

At that point we decided to take a break from the sessions for a couple of weeks and I started asking around to other mommies if they had suggestions for ways to help us learn how to nurse. More to come on that and how we spent the last 3 months  to come later this week.

Right now I have to go put up the night’s pumped milk, lay the baby down to bed and nurse the toddler.  And I feel so very blessed to be able to do just that.

31 for 21, day 18 “Special Needs”

IMG_9505I’ve always felt like people write someone’s inability to instinctually know how to do something off to mental retardation a little too quickly. In an earlier incarnation of my life I worked with adults with developmental disabilities that had lived the majority of their life in institutional settings and were transitioning into the community. From the time they were wee babes until The State; mind you the same modern day version of the experts who recommended institutionalization to families many moons ago; now felt they might be best; and in a cheaper fashion served in a community setting. Here’s the thing; by having put people who were in the prime developmental periods of their lives into cribs in institutions where it was impossible to receive one-on-one, or even small group setting attention they could have received at home- or at least the attention of a smaller ratio of grown-ups to babies then in the institution if there were other children in the household, it is impossible to base their potential for learning on history’s research. There is no history research that can show the brain’s cognitive ability available that I know of.

It was extremely unusual in the 1950’s, 1960’s and 1970’s  and earlier for someone with a diagnosis of moderate, severe or profound mental retardation to be living in their own home. It did happen but it was the exception. The function that folks who were institutionalized exhibit when moved into the community is not the same level of function that they could be capable of if they had been exposed to the same sights, sounds, experiences as other children growing up in their home. So when the cynics out there suggest that living with a person that has a diagnosis is a major burden to the family and society and ought to be terminated in utero when the diagnosis of Down syndrome can be made;  there is no way that their opinion; which they call fact based on history and research; can apply to modern day life.

There has been a huge leap in the abilities and development of children with a diagnosis of Down syndrome even in the last 10 years since the push to treat them as you would treat other children without the diagnosis. The culprit- Early Intervention. Strategic assessment and focus on areas that appear to be showing a delay in development. Those same cynics would argue that the mere usage of Early Intervention is a burden. One recent cynic has argued that it is only the middle class suburban moms that don’t see it this way. That the majority of families do see it as a burden because they don’t have access to therapies and support that a middle class family does. But of course- one could make a much more generalized argument based on that point of view that merely having children at all is a burden when you don’t fall into the category of “middle-class”. Although strangely this cynic seems to be focusing her attention solely on the diagnosis of Down syndrome and doesn not generalize her view to the population at large. I’m not going to link to her and her recent article here because she has been republishing her ignorant view and appears to be making money off of her exploitation of this view. And there is no need to pad her pockets for her eugenics stance. She’s already touting herself as an expert practicing OB which appears to not be the case. She is a blogging former OB no longer in practice targeting families that are facing pre-natal diagnosis and are already scared and seeking help in deciding whether or not to terminate a pregnancy based on what would be best for their future family member. I feel so sorry for the families that have turned to her for supposed support and expertise.

But I digress in my irritation with this person. As I mentioned I used to work with adults that were recently de-institutionalized. They were people who had previously been seen as incapable and in need of continuous support. When they first moved out and into their community it was easy to see why that was the view. They didn’t participate in any of the typical household activities that non-institutionalized folks did. But that is because they had never been taught how. Over the months with targeted guidance, these individuals began to learn and do the same household tasks that any other adult taking care of their home would. I remember specifically going over to visit a man with a diagnosis of severe mental retardation and very little speech that had moved into an apartment with a helper and one other person with a disability. When I showed up his helper was in the process of helping him to unload his own dishwasher for one of the first times and in the process showing him the name and sign for each of the items. In the middle of this the man signed “bathroom” to his helper who then told him to go ahead and come back when he was done. I know it seems like a silly simple example. But this man had never had the opportunity for such a normal interaction.  He was not given the opportunity to learn language during those critical early years when we all develop language and speech at an astounding rate. He was put in an institution and “taken care of”.

I also have a sister with a diagnosis of profound mental retardation that at a very young age; my family was told she would be best off in an institution. No one was offering services or therapies to help with her development. When I was in graduate school she was reassessed and de-institutionalization was recommended for her as well. Now, many years later she lives in her home with a few roommates and helpers. She gets up and feeds herself at the table with her roommates, she gets out and shops and visits in her community. She laughs and smiles when the sun and wind hits her face. She bounces along to the radio when she is riding in the car and shows a distinct preference for 50’s and 60’s rock-n-roll music; much like my husband. She grins ear to ear when my parents hug her and tears well up in her eyes when she hears their voice over the phone from a long way away on a holiday that they can’t be with her. Thank goodness for the dear staff taking the time to find this out and get to know her.

As a family member of a woman who it was recommended that be institutionalized; I heed the modern day “experts” to not judge the families that went through this most wretched and heartbreaking decision. When an expert tells you this is the best thing for your child; of course you will do it- we all want what is best for our children; and when society views them as vulnerable you especially feel the need to protect them. Fortunately the world is coming around and taking the time to get to know people who were previously viewed as practically non-human. Humanity is finally starting to see the humanness in all people. Over the next few generations the abilities of all will grow by leaps and bounds. New research is being done and people of all abilities are having opportunities to learn previously unheard of.

Some may still argue that is all well and good but it is still a “burden” to have to specialize teaching to the particular way a person learns. I would argue we do that already for all types of people. When a person is tagged as gifted and talented they don’t remain in a standard classroom. The parents wouldn’t hear of it. They want special, individualized opportunities for growth for their children. When a person shows at a young age a particular inclination for a given talent- be it sports or music, their parents and teachers take note and offer individualized training to encourage and aid the learning situation. Your tax dollars go to support these “gifted” folks as surely as they go to support those deemed in need of “special education”.  As an adult I am terrible at reading in instruction manual on how to work a piece of equipment. But if someone can just take the time to show me how they do it; I’ll catch on in no time. On the other hand my husband is best left to interpret the owners manual where he can read it at his own pace rather than having another person show him what to do.  I have a masters degree and he has a PhD. The fact that we have different learning styles does not mean we were incapable of learning. It means someone took the time to figure out how we best learned and supported that. There is tons of research out there explaining multiple intelligences and different learning styles. There is no shame seen in applying this to individuals with average to above average IQ’s. But for some reason some sectors of society have not embraced the appropriateness of this for individuals who are deemed of low intelligence by traditional testing methods.  It seems to me this is where it would be most appropriate and useful.

The other aspect of my career that validates this opinion is my work as a disability examiner for Social Security. I read psychological exams and compare the IQ findings to a persons functional aptitude. More often than not- adult women who show the same lower IQ range then men in the same category retain a higher functional capacity. My self-assessed explanation for this is quite simple really. Our society has traditionally viewed “keeping house” as women’s work. So when a woman with a low IQ was not given the opportunity for a school-based educational experience, if she was not moved into an institution; she was kept at her mother’s knee and taught to cook and clean. The men in the same type of circumstances were traditionally not expected to keep house or cook. Their abilities in function as adults typically reflect this.  This also shows the wide variation of functional capacity in people with supposedly similar intellectual quotients.

As a new mother of a person who will frequently be stereotyped by societies experiences and views; I feel extremely fortunate to have had the background I did so that I can be a little more open to the learning style other’s around me. I feel extremely fortunate that my lovely daughter was born in today’s world when we are a little less arrogant about negating her future potential. While the world may not be entirely open to her yet; I have confidence that through our love and support and by the sheer virtue of other’s good fortune to meet and know her ; the world will continue to evolve and become a slightly kinder and less judgmental place. At least that is my hope for her and others. Not other’s “like her”, just others. Because rest assured; if someone is taking the time to judge her; most likely someone else is taking the time to judge you. Increasing our capacity to understand and know people of all abilities does affect everyone. You may not see that today, or even tomorrow; but someday you will hopefully understand.