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?

Reminding Me Why

I was silent for a year for many, many reasons - the biggest of which was probably just exhaustion (ha!), but the words and ideas have been forming over the past several weeks. This move has created a renewed sense of wanting to invest time and energy into this corner of the internets, and a desire to push past my tiredness, laziness, and perfectionism, in order to actually publish posts. I think I initially felt that it would be a way to update friends and family back home on life and the goings on, but this morning I was reminded of the bigger picture, and it is one that I can't avoid or ignore.

Advocacy.
Education.

Understanding.

Down Syndrome.

One of my favorite sayings over the past several months has been: "You don't know what you don't know." I didn't know that I was going to have a baby with Down Syndrome. I didn't know that I was going to be ushered into this group of people who have been impacted by something so small as an extra chromosome. I didn't know that I would (whether I wanted to or not) become a walking billboard for what having a child with Down Syndrome would be like. And you know what? I actually didn't know very much about Down Syndrome. And that's okay! You don't know what you don't know until you realize there's a gap in knowledge and understanding that needs to be filled. 

Social media plays an important role in that awareness, and it impacted my process of grieving and acceptance in the beginning of our journey (a story I'll tell another time), but today I was reminded of the responsibility I have been given. One of my all time fave IG celebs is a 6 year old girl with Down Syndrome named Chloe (Coco for short) who's life is documented by her mom on the IG account @lilcocobea. She is sassy as all get out, and loves to sing, dance, cook, and shoot her own make-up tutorials (no I'm not joking). This morning's post on her account was dedicated to a couple that had viewed Coco's account while they were in the parking lot of an abortion clinic because they had received a diagnosis of Down Syndrome for their child and they had decided it was the best option for them. Lilcocobea showed them, just by being herself and living her life, that maybe DS wasn't so scary, and gave them the courage to choose life for their baby. 

This is profound on many levels, most of which, I am sure, are not lost on you, dear readers. However there is a component to this that I never considered before I was standing where I am now, and that is: relief that there will be one more person in this world who will be like my Mildred Pearl. This is one more step toward allowing Mildred to grow up in a world where she may actually be able to have friends with the same number of chromosomes that she has. There is more to say on this subject, but I'll leave it there for now.

So, here is my opportunity to teach myself (I still am learning EVERY DAY about Down Syndrome), and others, about my daughter, and others in our beloved Trisomy 21 Club.

There is a blogging challenge for the month of October to write (and publish) a post for every day of the month of October. October also happens to be Down Syndrome Awareness month. So I have decided to share something about Down Syndrome every day for the month of October. Now, I have some ideas (and pictures... I'm sure I can scrounge up some pictures ;) to share. And I have some subjects that I've been meaning to research about for my own personal growth (relating specifically to DS and awareness), but that covers about 6 posts. So, although I'm sure only a handful of people would complain about daily Mildred pics ("Millie Mail" as I call it when I send them to the grandparents), I want to know what you have questions about!

What do you want to know?

Are you wondering about anything as you've been following my posts?
Do you have questions about terminology/ability/delays/etc.?

Have you seen or heard something from somewhere and you're wondering if its true?

I want to know!
Don't be shy. Don't be worried about offending. Don't be embarassed.

We don't know what we don't know, until we do. And how will we know more if we don't have the courage to ask? ASK! You can leave questions in comments, or private message me, or text me, whatever works best for you.

You are Millie's tribe, she needs you too.

-M