An unexpected confrontation.

We just closed out the month of October, which is Down Syndrome Awareness month (officially declared in the state of Washington, which is pretty cool!), and although I wasn't able to post specifically for that purpose as much as I would have liked, it is nice to celebrate Down Syndrome. We do a LOT of celebrating Down Syndrome in this family. We LOVE Down Syndrome, and are passionate about sharing that love with others for a better understanding and openness to people with Down Syndrome.

We share Mildred's sweetness, and beauty, her funny quirks and stubborn disposition. We celebrate all of her accomplishments with reverence and awe, knowing full well how hard she has worked to meet those milestones that come so naturally for many "typical" kiddos. Millie's weekly therapies, biweekly OT play groups, and doctor's appointments are (for the most part) filled with praise of Millie's accomplishments, growth, health, and love-ability. Even her IFSP (Infant Family Service Plan - the IEP substitute for children ages 0-3) meetings are focused on the growth, development and progress she has made, while still setting goals for the future. We are so blessed and supported!

Viewing Mildred (and Down Syndrome) through this lens of positivity is effective in keeping up the rigorous pace of constant therapy, practice, therapy, practice, rinse and repeat. It breathes life into difficult moments of stubbornness and inability and helps us to focus on the growth rather than the short comings. Until, of course, you have to face those short comings head on.

It happened today, that unexpected confrontation with reality, just like it has periodically over the last two and a half years. I had a phone interview for the process of determining if Mildred is eligible for an assistance program, and a part of the determination is examining how "disabled" she is by her disability. As the litany of "can your child..." went on, I felt the lump forming in my throat and tears welling up in my eyes.

No... No... No... No, she can't talk. Well, she can talk but only has about 4-5 spoken words. No strangers cannot understand her most of the time. Yes, she can walk independently, but only for short time and not without help over uneven surfaces. No she cannot run. No, she cannot follow directions. No she cannot follow two step directions. No, she cannot point to the parts of her face and body. No she is not cooperative in getting dressed.  No she cannot dress herself, feed herself with a spoon, brush her teeth....... 

The reality of Millie's disability began to overwhelm me, and I cried silent, warm tears for my baby girl and all of the things that she has to work so hard to accomplish and yet, still falls so far behind in. It hurt my mama heart to hear concretely all of the age/developmentally appropriate things that she can not yet do.

The thing is, its not like I don't know it, you guys. I mean, I'm not blind or naive (well... maybe a little naive ;) but especially when Mildred is around other typically developing kiddos her age I see the difference - it's there in front of us so clearly! I had to face it when working with her pre-school teachers who so lovingly are trying to figure out how to meet Millie's needs and include her in their "general ed" classroom and seeing how many tasks she simply is unable to do, and how much attention and support she needs.

And yes, I KNOW that her worth does not come from her ability to meet developmental milestones, or accomplish tasks, or get certain grades. And I KNOW she will do things in her own time and in her own way. I KNOW that she is amazing, and a wonderful gift, and we are SO LUCKY to have her in our life, just as she is. And I KNOW she is changing, and will continue to change, our world. Believe me, I KNOW that better than anyone - I live that every minute of every day.

But today, I think I just want to say that it still is hard. and painful. and there is still a grief over how difficult things are for your baby, and how much more fighting and working and growing they are going to have to do in the future. There is a death to mourn there, and today I was hit with that grief. That grief is borne out of love for who my child is, who she REALLY is - both in and apart from her disability, and a longing for an easy, joyful, "normal" life.

I share a lot of the "sunny" side of Down Syndrome, and it definitely is! But this is life with Down Syndrome, (special needs) too. It doesn't do anyone any good to gloss over the hard and messy stuff, and it doesn't do anyone any good to "just look on the bright side." There HAS to be both pieces: the positive and negative. They balance each other, and without the negative, the positive isn't quite so positive.

So now I have grieved. and I will have a funeral for that death of expectations of normalcy.
And then I will move on and be an advocate and cheerleader for my amazing little girl. And her tribe will rally around her and support her and she will exceed all of our expectations and continue to be the amazing little pearl that she is - because she is our Mighty Millie Pearl.

Club Twenty One

I'm not one for big social gatherings, particularly not one my own in a group of people I've never met before. It's one of the many (and MAJOR) ways that being Mildred's Mommy empowers me to be more bold and more brave than I would be on my own. So when Britany, a mama I had met exactly ONE other time, invited me to join her for a mom's meetup event for Club Twenty One, I still am surprised I said yes, and went with her.

We drove together (because God knows I would not have walked up to a group meeting I have never been to completely on my own!), and hauled our ass..ets all over the park trying to locate the one place we hadn't walked past (surprisingly) where the group was meeting. I anxiously said hi and gratefully followed someone's directions about filling out name tags and then spread out a blanket among the rest of them and sat to picnic with my girl. I remember that I left that event feeling loved, and understood.

Overwhelmed by the schedule of therapies, work, and school, it was months (I think 3 months?) before I was able to make it to an actual weekly meeting. I went all by myself this time, inspired by a desire to attend the sign language class they were offering that Friday morning, and an unprocessed need for community. I pulled myself up from my bootstraps, and talked myself down from a panic attack as I walked alone up to a random Church building looking for the group. I walked to the wrong side and a Church volunteer pointed me in the right direction and I finally spotted a little sign: "First Steps - Club 21." I was so anxious about figuring out what I was supposed to do and how it all worked and when I walked through the door - I'll never forget it - Rachel (one of the volunteers) greeted me by name.

It makes me cry when I think about it. I was a stranger, and yet they welcomed me as family. I felt known, understood, relieved to be around other children who are like my baby, and other mothers who have walked the same path. My heart rested. This was home.

I left that meeting completely filled to the brim with love, and excitement, and courage. I tried to explain it to my husband, through tears, on the long drive home. My husband, my parents... they were excited for me, they were glad I had found this group to participate in... but the didn't quite "get" it. I invited all three of them to come with me to a meeting (individually), on their own terms, and waited patiently until each one of them found the right time for them to join me. One by one, I watched each one of them fall in love with this new family I had found in the same way I did. Somewhere along the way, I realized what had happened:

We had found our tribe.

These families know first hand what it is like to hear the doctors tell you that your newborn baby, "is showing markers for down syndrome," and to spend the first few days of your baby's life flooded by confusion, fear, questions. They, too, have fought for their child to have access for services and therapies to help them to overcome difficulties that often are associated with Down syndrome. They know the highs and the lows, the ins and the outs, and they want to stand there with us, and we want to do the same for them.

I feel so grateful to be a part of club twenty one - both in the general sense, and in the specific-to-this-organization sense. ;) I can't speak for ALL of the things they do/offer, but I would like to share the things I know about:

Weekly meetups at each age group from Birth (expecting mothers) into adulthood
First Steps (0-3 meet up group that we attend) provides OT, PT, SLP, and Sign Language Classes monthly
Twice a month parent education classes
Mom support/ Dad support groups
Siblings group for the typical (non-Down syndrome) siblings
Social outings for teenagers/families
Community outreach
IFSP (Individual Family Service Plan) coaching/training
IEP (Individualized Education Plan) coaching/training/advocacy support
Family Support

And one last thing that I have to highlight because I think it is AMAZING:

Club 21 has developed, implemented, and administers a 3-day Teachers' training conference in which they present current, up-to-date research about Down syndrome, intelligence, learning, and education methods. They teach teachers how to better serve and educate students with Down syndrome! AND - they PAY the school district the sub stipend so their classroom can be covered for them to attend the conference! They have trained over 100 educators in over 50 different school districts. Think about the impact of a program like that!

Club Twenty One is founded on a principle of inclusion. Their mission statement is as follows:

Our mission is to provide the tools and resources that enable individuals with Down syndrome to be fully included in society. Our goal is for every individual with Down syndrome to have independence, access, and belonging.

I don't know about you, but THAT is a mission I can get behind. So, to support this mission, and give back to our tribe, we will be participating in their annual "Together Is Better Walkathon" to raise funds, and awareness. We're SO excited for this day of celebration and community.

If you would like to join us, you can find our Team page here.
You are welcome to join us for the walk which is Sat 10/22, and if you would like to donate to our team and help us meet (or exceed!) our goal. If you can't donate, you're still welcome to walk!

Photo credit: ADVTR Photography

Measuring growth

I think that probably the number one question I get asked is whether or not Mildred is doing whatever-the-developmental-thing-it-seems-like-would-be-age-appropriate-to-be-doing.

Is she walking yet?
I'm sure she's crawling all over the place!
She doesn't sit up yet?
When will she start crawling?
Is she talking?
What words does she say?
She's probably running all over and keeping you busy!

Now let me start by saying: I get it.
I find myself (still) asking these questions to mamas that I know, and even to some in the Down Syndrome community. I think it is important to acknowledge first that, in my own personal (and very limited) experience, these questions come from a place of absolute total love and caring. We ask these questions because what we really want to say is:

How is he/she doing? What is going on in their little world? Your child is beautiful and I want to share in your joy.

We tend to use milestones or other markers as measurements of health, happiness, and sometimes even projected success. This seems no big deal to the parent who's child is meeting all those markers within the "normal" range... but when delays begin to occur... what does that mean? Is my child ill? Does my child have delays? Do delays mean future struggles in life? If my child doesn't meet these rubrics, will he/she ever have a successful, fulfilling life?

Down Syndrome has helped me to try to separate things and accomplishment from intrinsic value and worth. If I'm completely honest, this is super challenging for me. I have spent my own life trying to be perfect, and do all the things and do them well, all while getting people to like me. Down Syndrome has shown me how ability/accomplishment oriented I still am in my heart of hearts. I have had to confront my "doing" instinct which wants to crowd out my "being." As the lyrics to one of my favorite songs go: "I'm Mary and I'm Martha all at the same time. I'm sitting at His feet and yet I'm dying to be recognized." ("Lament" -Audrey Assad)

Mildred helps me to just love, and not measure.
I was talking to another mom of a child with Down Syndrome after one of my posts last week and reflecting on this experience of comparison. Comparison is not just to other children and what they are accomplishing, but it is also to the rubric of "normal" development. And I am aware that this is not a phenomenon that is specific to DS. This is a parenting thing, not a Down Syndrome thing - comparison. I think the difference is that there is more weight behind the question of when these things will happen when you're a parent with Down Syndrome. It occurred to me in that conversation with another mom why that is...

Underlying everything, in the back of the mind of a parent of a child with Down syndrome, is the question: Will my child ever be able to do that?

This is important. It's scary to admit that I do have an underlying fear of how capable my daughter will be! Does that make me a bad mom? No. Does that mean I have failed Mildred because I have those flickers of doubt or concern? No. I think it comes from a deeply rooted societal question about the capability of people with Down syndrome. What I mean is this: as a society, we still don't KNOW that people with Down syndrome ARE CAPABLE. There is still a question mark hanging in the back of our minds as to whether or not that milestone is going to be achieved.

We have to make this stop. We have to change the questions in the back of our minds.
If I had known then what I know now...
there would be NO question in the back of my mind.

M holding my hand while we walk

So this is what I have to say for any parent of a child with Down syndrome (or facing a diagnosis of Ds), just as my brother-in-law so poignantly said to me:

Raising a child with Down syndrome is just like raising a typical child. They may not get to all the phases at the same time as other kids, but they
WILL get there.

When I'm at my best, I can see that clearly and confidently, and I have no fear. Mildred CAN. She has shown me that. And sometimes it looks different, and sometimes we have to work and work and work for things that come easily to others, but that doesn't mean she won't do it, because she WILL.

I have more to say, but Millie is awake, so I must go. :)

Meeting the milestones

Mildred was 6 months old when we traveled to Stanford, CA for Thanksgiving with the O's and the usual obligatory family holiday tailgater for the Stanford/Notre Dame game (Go Irish!). It was the first time my brother-in-law was able to meet Mildred, and I'll never forget what he told me:

"Raising a baby with Down syndrome is the same as raising a baby without Down syndrome. You'll get to all the milestones that a "typical" (non-Down syndrome) baby will get to, its just on a different timeline."

Having four children of his own, one of whom having Down syndrome, his perspective was gold to me, and I have come back to his words time and time again, and know I will continue to revisit them in the future. Remember what I said a few blogs ago? "You don't know what you don't know." Yeah. That.

 

As much as the unknown of what to expect from Down syndrome was challenging, Mildred is also our first child and so there was a constant questioning of what normal is. And not only what is normal for Down syndrome development, but also what is normal for babies in general. It was a constant tangle of questioning what was typical, what was Down syndrome, and where the distinction was between the two. I know I must have driven my sister-in-law crazy asking questions about Timothy (my nephew who has Down syndrome) because I was constantly wanting clarification about what was "a DS thing" and what wasn't. She was so patient and gentle, even though she may have been frustrated or offended, she never showed it. I hope I have offered the same graciousness to the people in my life (myself included) wrestling with those questions.

It is this desire to put everything in a box, to label it and know how it is going to proceed - what it is going to look like. It's so confusing! And I think, perhaps because I was a first time parent, there was extra confusion because I didn't have the ability to anticipate what was next (although I will say that I am grateful, and God knew what He was doing). I found that I was (mostly) able to feel very optimistic and excited about the growth that Millie was making, and the ways she was advancing. Every day I was floored by her, and even though our expectations were high, it was amazing to see what she was capable of time and time again! 

...until I was around other people, especially other babies.

Four of my very best friends and I all had babies within (nearly) the same year of each other, and 4 of the 5 of us gave birth within a 6 week window of each other. (It's super cool, I totally recommend being pregnant at the same time as your besties!) What that meant for me, however, was a built in measuring stick every time we were together. My friends are really the best kind of women, and friends, and I don't know that they ever realized this was happening, I know I wasn't able to articulate it at the time. Being around other children that were the same age as Mildred, who didn't have Down syndrome, felt like shining a massive spotlight on all of the ways Millie was different, or behind. 

I want to be very clear here: not one time did ANYONE in my life express anything other than support, love, and pride at all of the progress Mildred was making (and has made). Not one time did anyone compare milestones as a means of measurement of superiority, I am blessed beyond measure by the support in my life, but that doesn't mean the comparison monster didn't rear his ugly head in my own mind and heart. The strange thing about the whole experience was that I would feel almost as if everything was "normal" and nothing was wrong at all, until we were out in public and there were other babies to compare Mildred's development to. In public, next to other kids her age, it was if all the secrets were exposed and I felt vulnerable.

All of this goes to show how much value and worth we (I) still attribute to accomplishment, ability, achievement. Having a child with Down syndrome has challenged my concern with the opinions of others, and my anxiety about what other people are thinking of me. I have had to really look at an evaluate my own ability to love unconditionally, and try to refine the conditions that actually are at work on the measure to which I am willing to love.

Mildred challenges me.

She challenges the deepest parts of me.

This challenge comes not from the conscious choice to learn how to love this "imperfect" person; but rather, from the perfection that she is and the way that it challenges, stretches, perfects, the imperfections in me. 

My prayer is that, through being Mildred's Mama, I can learn to love unconditionally, that I can see with eyes that are so consumed by love, that they don't seek to measure.

Tomorrow: Range of Development for people with Down Syndrome, and sharing Millie's progress in meeting those milestones. 

Go Irish!

In which I tell you all the things - DS facts

"...but Maegan, apart from cute babies, what is Down Syndrome? What does it do? What does it mean for the people that have it?"

GREAT question, readers! I'm SO glad you asked! ;)

Let me share with you what I knew about Down syndrome before I had a child with Ds:

Down syndrome is the common name for a medical condition called Trisomy 21.

Most people have 46 chromosomes, (23 from Mom, and 23 from Dad), that come together to make up the unique traits of each individual person. People with Down syndrome contain a whole (or partial) EXTRA chromosome of the 21st order. (ha! ;) so... that 21st chromosome is TRIPLED, hence: TRIsomy 21.

People with Down syndrome are just a little different from people without it. 


Annd there you have it! The extent of my expertise on Down syndrome!
Most of what I have learned, I have learned by necessity. I think that's important for new and prospective parents to hear. You learn what you need when you need it. You might learn some stats, and digest some information, but the real meat of what you need to know comes with necessity. You will learn, just like I am! You don't have to be an expert.

So, let's learn some things:

source: http://brandongaille.com/16-stunning-down-syndrome-demographics/ (2015)

I'll share more in upcoming posts about our own experiences, etc., but for now I'd like to know what you have learned? Did any of this information surprise you? What would you like to know more about?

Our Scarlet Letter(s)

It struck me last week as I walked down the aisle of the grocery store, Mildred sitting in the cart in front of me watching all the people and all the things (per usual) that so much has changed. I have changed so much. We've come so far in just 16 months, this Millie girl and I.

I vividly remembered walking the aisles of my favorite store (which shall remain nameless, but its logo is a big red target), overcome with a paralyzing uncertainty, wondering what everyone saw when they looked at my baby. I, of course, was infatuated with my newborn love (because what Mama isn't? But also:

yeah. that's what I thought. ;)

I felt like there was this enormous question mark hovering above our heads in true Hester Prynne fashion. I felt the eyes of every new adorer as they seemed to search her closely for answers: "Does she?...Doesn't she...?" I was defensive against an attack that I never actually encountered, but felt that somehow would come. I felt that the whole world could see a diagnosis that I had missed, and I still couldn't see it. I also could feel the weight of people's questions as they fought to keep them inside, unsure of how to ask them. 

I remember feeling desperate for people to just tell me what they were thinking, or wondering, but also being terrified of the answers, or lack thereof - feeling like I owed the world an explanation, but resisting feeling like I was putting a disclaimer on my own daughter.

It is interesting to look back now at that time of confusion, and pain, and postpartum hormones (so many hormones!) and see it with different eyes. What was I so afraid of? So much. I was afraid of so much.

 What will her life look like? Will she be a vegetable? Will she have a fulfilling life? Will she ever go to college, get married, have kids? Will she be able to be independent? Will we always be outsiders now? Is everything going to always be hard and different? Will she still be beautiful? Will people make fun of her? What will her ability level be? What is it going to be like to have a special needs child? 

Here is what I realize now: those questions aren't all that dissimilar from first time (or new again) parents. The difference is how much we take for granted as being a given. The hard truth is that nothing in this life is a given (save for death and taxes, as my Papa Joe would say). Eating, breathing, crawling, walking, reading, speaking, interacting, etc., they are not guarantees. Each of those things is an accomplishment in and of itself, just ask any special needs parents and they'll tell you how amazing each of those steps are. And we so easily forget that health is not a given for any one of us, Down syndrome or not.

Down syndrome has given me the gift of perspective.
Because of Down syndrome, we get to work really hard, and truly celebrate each milestone with gratitude.

So...
when you're in the store and you run into the newly postpartum mom or dad, what do you tell them?

"Congratulations. He/She is beautiful! What a gift!"

because no matter what, they really truly are.

Accepting the Diagnosis, and Going to Holland

Many people ask if we knew that Mildred would have Down syndrome before we had her. I guess the answer to that is: Yes and No and No. You can read about our first ultrasound indicator here, and about our genetic counseling and high-risk ultrasound experience here and here. Yes, we knew it was a possibility. No, we did not do the amniocentesis to confirm/deny a diagnosis. No, there were no concrete indicators on the high risk ultrasound, and the OB told us we had a healthy baby (more on that in another post). 

Here's the raw, vulnerable, (ugly) truth:
I didn't think my baby had Down syndrome. There was no part of me that expected a diagnosis.

I was being honest in my post when I said that we would be blessed beyond measure to have a baby with Down syndrome like my nephew, Timothy. I genuinely believed that! However I also genuinely believed (though I'm not sure I admitted it out loud to anyone), that it was statistically improbable to have two children with Down Syndrome within the same extended family. And I think part of our humanity (or maybe just my own sinfulness), began to operate on this "it's great for you, but it isn't going to happen to me" mentality. On the one hand, I loved every aspect of my nephew, and believed in his capability and was not disappointed in his diagnosis in the least, but on the other hand, I wanted MY baby to be perfect. That's the ugly. That is the part that I could just pretend that I never felt, and act like I'm the perfect Mama who never faltered in acceptance, but that isn't reality and I don't think it does anyone any good to pretend like everything is roses. It just wasn't what I had planned for my life, or for my child's life. 

That isn't the end of the story though, and I want to make sure any moms or dads who are facing a diagnosis and feeling this way know that. It doesn't stop here, with disappointment, confusion, fear, whatever it is you are feeling. It's not worse, just different. This poem, which is a popular one that circulates in the DS community, articulates the experience beautifully.

Welcome to Holland

BY EMILY PERL KINGSLEY

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice Holland has windmills...and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very significant loss.

But...if you spend your life mourning the fact that you didn't get to go to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

***

©1987 BY EMILY PERL KINGSLEY.
ALL RIGHTS RESERVED.

So you see,

It turns out... Holland is pretty great, and I wouldn't trade my Tour Guide for anything. :)

Feel free to send/comment any questions you may have, or things you are curious about and I'll try to address them this month!