Rockin' Mom Retreat 2017 Part 2: Spreading the Good

My previous post discussed two of my takeaways from the 2017 Rockin' Mom Retreat I attended a week ago: the importance of taking time to care for myself and the importance of finding and focusing on the positives. So we spent the weekend bonding and learning more about self-care, but now what? 

These ideas are somewhat inwardly focused, but DSDN's mission is anything but! Since its inception on March 21, 2014 (World Down Syndrome Day and exactly one week after Jackson was born!), DSDN's mission has been "to connect, inform and support new families at the time of diagnosis and to impact the diagnosis conversation so that every family receives accurate, up to date information along with the diagnosis."

From one hundred moms who connected after their diagnosis on Baby Center, DSDN has become an organization that has connected over 4000 families worldwide and continues to grow daily. However, the connecting part of the mission is just one small part. During the retreat we also spent time learning about different ways moms can inform and support. I am calling this "Spreading the Good." 

And let me tell you, some moms have taken the idea of "spreading the good" and have run with it. Two moms, Becky and Megan, announced the launch of a new organization at the retreat: Down Syndrome and Cancer Coalition. Down Syndrome and Cancer Coalition's purpose is to help support parents whose children have both DS and a cancer diagnosis. These two moms have gone through their children with DS having cancer, they saw a need within this particular population, and they decided to do something about it. You can learn more about this awesome organization at https://www.facebook.com/Down-Syndrome-Cancer-Coalition-755990774576846/

When Nancy Gianni, one of our retreat speakers, saw a need for a place for children and teens with DS to go to learn and play, she went on to found the first Gigi's Playhouse. There are now 33 Gigi's Playhouses around the country! Plus, at one of the breakout sessions we could attend on Saturday, moms learned how to bring a Gigi's to their hometowns. What an amazing instance of one mom's mission continuing to inspire other moms to spread the good!

For me, this is where DSDN has really hit its stride. Yes, it has connected over 4000 families, but it's these connections and the opportunities DSDN provides, like the retreat, that continue to inspire and empower moms. 

And what do empowered moms do?

Empowered moms start organizations. Empowered moms bring amazing organizations centered around DS and achievement to their communities. Empowered moms write letters to the doctors who delivered their child's diagnosis (see mine here). Empowered moms take up-to-date and correct literature about DS to doctors, genetic counselors, and local DS organizations (You can order these for free here). Empowered moms reach out to families with a new diagnosis. Basically, empowered moms see a need within the DS community and figure out ways to fill it. 

I can't speak for other moms, but when Jackson was born and we received his diagnosis, I was pretty much the exact opposite of empowered. I felt, alone, ashamed, and wanted to crawl in a hole and hide. I can't express how horrible it is to feel that way after giving birth to your child. I remember one particular phone conversation I had with a friend who hadn't yet had children; through tears, I told her not to risk having children at our age because it wasn't worth the heartbreak. 

Yep, that was where my head was, but thankfully, due to other empowered moms, DSDN was there to help me get connected to other moms. Those moms embraced me, helped me through the initial grief, and then empowered me to work with other new moms. I figure if I could have been in such a dark place and come out on the other side to revel in the beauty of my child's very worthy existence, then maybe other new moms might need to see an example of what the other side can look like. 

Sometimes it's easy to think that these smaller actions aren't worthwhile, but at the retreat they showed a very fitting video about a little girl throwing starfish back into the ocean. It was an enactment of the Starfish Story, pictured below.

From personal experience, I can unequivocally say that the moms who reached out to me after Jackson's diagnosis were so important to my journey. They made a difference to me, and I now strive to do the same for others. 

To quote Theodore Roosevelt, “Do what you can, with what you have, where you are." After this retreat there is a group of 300 enthusiastic and empowered moms on a mission to change the world for their children. I can't wait to hear about all the ways-big, small, local, international, etc.- that my fellow DSDN warrior moms decide to SPREAD THE GOOD.

See you in Phoenix!

Rockin' Mom Retreat 2017 Part 1: Finding the Good

Look at the picture above. In it, I am surrounded by women who just "get it." I share one very important thing with all of them: we all have a child who has Down syndrome. 

Funnily enough, three and a half years ago, when we received Jackson's diagnosis, I had never felt more alone. 

However, last weekend I traveled to Chicago for the third annual Down Syndrome Diagnosis Network Rockin' Mom Retreat. (We are Rockin' Moms because our kids rock their extra twenty-first chromosome.) I spent the weekend in a hotel with three hundred other moms who had also at some point felt alone due to their child's diagnosis. Do you understand how incredible that is? 

To go from being isolated and enveloped by fear to being initiated into the coolest club you never knew you wanted to be a part of...let's just say that when the doctors gave us the list of all the things we might face in the future due to our children's diagnosis, this experience was definitely left off!

One of the focuses of this year's retreat was self-care: what us moms need to do to keep ourselves physically and mentally healthy while on this journey of parenting a child with additional needs. 

I don't think it's any surprise that most moms tend to put themselves last and need to make time to take care of themselves, but when you have a child with a disability, there are other stressors added to the mix that make self-care that much more of a necessity. 

One of the speakers at the retreat had us take a good hard look at ourselves and challenged us to admit areas of stress in our lives. She gave us warning signs of burnout, and the running joke became "Um, what happens when you have all of the warning signs?"

Due to some stressful circumstances in our life recently (Hurricane Harvey, a flooded house, evacuating said house by boat, and not being able to live in our home for the next couple of months), I knew this retreat was the self-care I needed. I needed to get away from the muck for a few days and to be with the moms who have been my support system for over three years now. I needed to recharge and refocus on the positives.

Another one of our speakers, Rachel Coleman of Signing Time fame, spoke to this shift of focus. As a mom of two daughters who have disabilities, Rachel truly understands what the moms at this retreat experience. She understands the frustrating doctor appointments, the grim diagnoses often painted by medical professionals, the endless therapy sessions, etc. She understands the darkest of hours when these things become too much and you allow yourself to think or say something horrible that you know you don't actually mean.

However, Rachel also understands this: she knows that focusing on those negative things doesn't do anyone any good. So she challenged us to define our lives differently, "to make up our 'why' and to make it something awesome." As one of the songs she sang for us states, "Maybe we won't find easy, but baby, we found the good."

So as I head back to Texas to deal with all the post-Harvey stuff waiting for me there, it would be easy to focus on the extra stressors of our current situation, but I am going to try my hardest to take the retreat lessons to heart. I hope we all can remember to be kind to ourselves and, when there are some hard days, to decide live our lives as "unexpected adventures."

Looking around the room while Rachel sang the song mentioned above, I saw three hundred moms who on a day-to-day basis face some pretty tough things, but we were all crying, nodding, and smiling because we all now know, despite those darn lists the doctors gave us, that when our babies were placed in our arms, we had found "the good."

Down Syndrome Awareness and Advocacy Month Day 18: Fight for Inclusion

Let me tell you, the story below puts my stomach in knots. We are a few years away from Jackson going to kindergarten, but I am already preparing myself to have to fight for his right to be in a general education classroom with his peers. Somehow, although it's the law, school districts still justify keeping children with special needs away from their peers for most or all of the day. It is obvious that Jackson CAN learn, but will others believe it and continue to foster his learning if it doesn't fit neatly into the schools' and teachers' plans?

The family in the story live in a neighboring school district from ours, and they are currently in due process with the school district with the hearing going on throughout this week. They are fighting to have her daughter in mainstream classes for kindergarten! It shouldn't be this hard.

I am preparing myself to be Jackson's advocate, and I am hoping my posts over the next day or so about inclusion will others more aware of why doing so is still necessary and important.

Family Fights Tomball ISD To Include Special-Needs Daughter In Mainstream Classes

Down Syndrome Awareness and Advocacy Month Day 17: Starting the Conversation Early

Another way to change the conversation is to start having it early with children so that by the time they are school age and even adults, the stigma and fear is no longer a part of the topic. 

When they are very young, most children won't even think twice about the differences in their peers, so it might not be something to bring up. Let it come up naturally. 

When they do start to ask questions, consider the age of the child asking. Young preschool and elementary school-aged children probably don't need a detailed explanation involving extra chromosomes. An explanation that their friend has something called Down syndrome and that it causes them to learn differently and/or causes certain things to not come as easily may be all it takes. 

If a child asks "What's wrong with" their friend, it's important to address that there is nothing wrong with the child who has DS. If they ask this in public about a stranger, it is easy hush them through our embarrassment and quickly remove ourselves from the situation, but this reaction only stresses the child's feelings that something is "wrong." Instead, if possible, talk to the parents of the child and the child. Our children learn by watching, and if we avoid interaction with people with different abilities, this implies that there is something to be uncomfortable about. 

It's important to have a discussion about how we all have differences and that these differences make us special and unique. However, helping the child focus on the things they have in common (they both like to read books, color, play tag, listen to music, etc.) with their friend will remind them that their friend is more alike than different. 

I so appreciate those who have contacted me about this topic and who want to "get it right" when talking with their children. The fact that you care enough to want to find out more already shows you're on the right track.

Here are several books for children that discuss Down syndrome:

• 47 Strings. Tessa's Special Code
• We'll Paint the Octopus Read
• My Friend Isabelle
• The Prince Who was Just Himself
• My Friend Has Down Syndrome

Down Syndrome Awareness and Advocacy Month Day 17: How to Change the Conversation

A few days ago I wrote about the need for a change in the conversation that occurs between medical professionals and parents receiving a new diagnosis, but how do we go about facilitating that change?

For parents who have received a diagnosis, one way is to let your doctors know what they did right and/or wrong during the diagnosis process. The #DearDoctor campaign through DSDN is helping give moms a voice and the courage to do this.  This link discusses how you can write your own letter:

http://www.dsdiagnosisnetwork.org/birth

For any mother who feels passionate about this topic either from personal experience or from knowing someone who has gone through it, you can also share information from DSDN with the medical professionals with whom you have contact. You can request several different types of information (free of charge) to share with medical professionals and/or therapists.  I did this last March 21 for World Down Syndrome Day. I took blue and yellow ribbon cookies, DSDN materials, and copies of the book The Parent's Guide to Down Syndrome: Advice, Information, Inspiration, and Support for Raising Your Child from Diagnosis through Adulthood by Jen Jacob and Mardra Sikora; and Jackson and I visited both my OB and his pediatrician that day. I also recently shared DSDN literature with the genetic counselor we have worked with during this current pregnancy. She and I had a wonderful conversation about how to turn sharing a diagnosis with a family into a more positive experience.

Request the materials here: http://www.dsdiagnosisnetwork.org/local-support

Finally, the change in conversation needs to go beyond what happens between doctors and parents. We can help change society by not being afraid to discuss Down syndrome with children. My next post will focus on some ideas on how to talk about Down syndrome with children who may have questions.

Pregnancy and Infant Loss Remembrance Day- Oct.15

"The other night, dear, as I lay sleeping
I dreamt I held you in my arms
When I awoke, dear, I was mistaken
So I hung my head, and I cried."
-from "You are my Sunshine"

October 15 is Pregnancy and Infant Loss Remembrance Day.

Today I stand with all my friends who never got to hold their babies or whose babies left them too soon. 💗💙

Down Syndrome Awareness and Advocacy Month Day 14: Changing the Conversation

Two days ago I shared a letter I wrote to the doctor who delivered Jackson's diagnosis. Our experience highlights an all too common occurrence where new or expecting parents are greeted with negative words when describing not only their child's diagnosis, but also their child's future.

There needs to be a change in conversation.

Instead of discussing a mother's "risk" of having a child with Down syndrome, an easy switch of one word could take away much of the negative connotation. While it is a doctor's responsibility to discuss this topic with parents, by using the word "chance" instead of "risk," the inherent negativity is diminished.

Instead of handing parents a long list of things their child may never do, doctors should become more current on the research showing all things that ARE possible for people with DS.

For instance, more and more adults with DS are living semi- or fully-independently. More are able to get their driver's licenses. More are attending higher education programs. In fact, did you know there are over 200 college programs for people with intellectual disabilities?

Doctors also often give outdated information regarding our children's capacity to learn. Parents are often told their child with DS won't be able to read. While our children do face some challenges educationally, they are strong visual learners and, when taught from an early age, often learn to read quite well.

In fact, we have been working on sight words and letters with Jackson more consistently this summer, and he has already picked up at least 15 words that he can recognize by sight. While he doesn't say all the words yet, he shows he knows them by signing. He also knows many letters by sight and can make their sounds. And I know other children around Jackson's age who can name and label all fifty states on a map and the planets in the solar system! I think I need to step up our game!

I understand that doctors need to inform of the challenges that can come with a diagnosis of Trisomy 21, but my hope is that the conversation they have with new or expecting parents changes to become more balanced and updated to also include the amazing things our children can and will do.