…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.
Go:
It would be so easy to trust the “experts”. After all, they’ve earned those accolades for a reason they tell me. They’ve studied and learned, and volunteered and worked and have been assured they know what to do. Nine times out of ten their expertise, it is spot on. Only I fear we are that tenth. No, I know that we are that tenth spot.
There is a certain level of comfort in being able to stand shoulder to shoulder with that someone who knows more than you. That someone, that with all of their expertise will take the lead. It takes stepping out of that comfort zone, putting one foot firmly in front of the other to step up and share your own knowledge, your heart, your mind, what you know- and to trust it is true enough for the day ahead.
And if I can’t trust what I know, how can I expect the others to do just that? I question myself day in, day out. I wonder if I know all I need to know to grow her, to educate her, to show her how to trust what she already knows about herself.
They came to me before she was even born to tell me what to expect, what to do, how to do it. To question my knowledge, my intuition, what I saw in her sameness, what I would see in the days ahead, how I would feel and how I would or would not know her. Then when she was born, they came to me again to tell me what I can expect- these experts with all their confident jargon and phrases. They tell me they’ve met others like her, that they’ve read all about her, that they know her and her special needs best.
Then she is born, she cries, she latches on to me and as she wakes her blue eyes sparkle while tracking me across the room. Her silent voice echos Momma in her heart, until it can no longer be silent, can no longer be contained there and it reverberates in all its impassioned righteous cries of “My Momma!!!” Each morning, she stands in front of the refrigerator stomping her own two strong feet crying “My Momma!!!” while I pry her small starfish hands again and again from my calves in the rush to leave for work, taking with her that essential piece of me she has always held.
Each evening I return as those same small hands fold into their home around my neck and she whispers our secret in my ear. “My momma.”, she tells me patting my cheeks, my back, welcoming me home. She shows me that she knows. That only she is the expert, she is who I will stand shoulder to shoulder with and she is who will bring me that comfort I crave.
Stop.
Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar!
My collection of birds at home and our beaches over the years.
…where a brave and beautiful bunch gather every week to find out what comes out when we all spend five minutes writing on the same topic and then sharing ‘em over here.
Go:
In our home, right now, brave is:
It’s walking with Ms. Kip over to a group of bigger, older, stronger girls as she says with a hand on your shoulder, “Class, this is Zuzu, She’ll be joining us now.” It’s stretching back into the bridge even though you felt like the teachers helping you laughed as they called your name over your collapsing arms right as they lifted your legs up into a handstand. It’s holding it together until you can tell your Dad in the safety of silver car, on the way home from your new intermediate gymnastics class where you were the smallest girl there for the whole two hour period how hard it was. It’s laying your head into the crook of your momma’s arm and repeating the story in weepy tones while begging to not have to go back because it is just too hard for a six year old. It’s listening as your parents retell the story of your first semester in gymnastics 2 years ago when you cried and cried after each class because you had gotten in trouble for talking and fidgeting yet again and how you had insisted you were no good at it back then for weeks at a time until one day you decided by your ownself that it was more important to get to take part in the springtime annual gymnastics show then it was to worry about each individual class up until then. It’s listening as your parents reframe your self-talk from “I’m no good at gymnastics” and “those other girls are better than me”, to “you are good” and “you are so good your teachers said it was time to move up and challenge yourself on a whole new level” and instead of seeing those girls as “better than me” tring to remind yourself that you too will learn what those girls have and those girls are there to show you what you are to are capable of. It’s agreeing to go back and try again over a strawberry yogurt treat because maybe next time your arms will be stronger. It’s standing up seven times after falling down six times. It’s agreeing to try. Always agreeing to try, maybe just that one time more.
Stop.
This story makes me so incredibly sad. My heart is broken for the Saylor family and their loss of a loved son. Who wanted to see a movie and whose death was ruled a homicide at the hands of the off duty police officers who restrained him when he refused to leave or pay for another ticket. No one’s life should end over something like this. An independent investigation is being called for by the collective of grassroots activists in the Down syndrome Community. Doing our part to put the word out there. Please share the link below to help put the word out and insist on an independent inquiry into this heartbreaking situation. Down syndrome does not cause someone’s death and should not be blamed for Ethan’s.
http://t21brigade.blogspot.com/2013/05/for-immediate-release.html
Corner view is a weekly Wednesday gathering, originally hosted by Jane, now by Francesca. A topic is given and you can see impressions; be it photographic or writerly in form, from around the world. Come see the world’s corner view via the links on the sidebar!
Her paternal Great- Grandmother was an opera singer. I think just a note lives on in her…
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.
