The Parent's Guide to Down Syndrome

A few months ago I was asked to review an incredible project: a new book called The Parent's Guide to Down Syndrome; Advice, Information, Inspiration and Support for Raising Your Child from Diagnosis to Adulthood, by Jen Jacob and Mardra Sikora.  This book has been heavily promoted among parents in our community, and has been the result of an intensive collaboration.

I was happy to have the opportunity to contribute a small part to the section on open heart surgery, and have been excited to review it here on Our Cora Bean.

I began reading my free copy of the book in January, just before my sweet girl's fifth birthday. Most of the time the events and feelings surrounding Cora's birth and first few months of life feel like they're in the distant past and are so far removed from my current reality.  So I was honestly surprised to find myself drawn so viscerally back to my initial feelings and memories from those early days. 

We learned of Cora's Down syndrome diagnosis after she was born, and I spent my days during her NICU stay stationed by her isolette, poring over books like Babies with Down Syndrome.  Without the convenience of a smart-phone or access to the internet, and with very little real knowledge about Down syndrome, that information felt like my lifeline. I loved the information, the photographs, the parent accounts and the descriptions of what to expect during early childhood. But it still felt like information was missing, and I found myself having so many more questions.

Now, as I watched my almost-kindergarten-aged daughter race around the house giggling with her sister, I was again reading a comprehensive book on Down syndrome designed for new parents, but this time I found myself not only wiping away tears, but nodding my head in agreement, and being heartily impressed by the resources and varied perspectives that the book offers. 

The book starts with explanations and definitions, works through the diagnosis (both prenatal and post- birth), gives input on finding support, processing and sharing the news, and then moves into common experiences over the course of your child's life. It covers medical care, surgeries and hospital stays, feeding, and many other challenges of those early months, as well as insight on day-to-day life. As the book progresses, it discusses your child's education, therapies, and the journey from infancy to adulthood. It touches, at least briefly, on a comprehensive range of concerns and experiences and seeks to give the reader a big picture, while offering details and resources for more information at the end of each well thought-out section.

Throughout, personal accounts from parents, siblings and people with Down syndrome pepper the pages, (including some of people I know online and in real life!) giving insight into the evolving and varied points-of-view of the families, and offering the immensely valuable perspective of individuals with Down syndrome.  So often it is the families of people with intellectual disabilities who speak for them, so including a range of voices of those with disabilities is invaluable, allowing us to see the people the book speaks of as real, whole, valuable individuals, and also helping to offer a glimpse of future possibilities to parents concerned for their children's futures.

Overall I was impressed with the range of information covered and the large number of voices included.  But out of all the great things included in The Parent's Guide to Down Syndrome,  my favorite may be the oft-repeated reminder that each of our children are unique, and that their experiences will be their own. When your child is a baby, especially a baby with a diagnosis that brings with it stigma and so many unknowns, it is natural to seek out the one right answer, the one right experience, the one example that will show you a picture of your child's life, and your family's lives by proxy. But this book wisely points out that there are no right answers or right experiences, that the path of each of our children and each of our families will vary widely, and that that is part of the beauty. If each parent reading this book were able to truly take that to heart early on, I'm sure it would help alleviate much concern and worry.

For me, as I fret about the upcoming IEP process that will determine so much of my daughter's future for the next dozen years, it is a poignant reminder to read Jen Jacob's words,  "Life is, of course about the journey for our children, but also so much about our often-parallel journey alongside them."   I appreciate the opportunity to recognize and respect my daughter as the unique and amazing person that she is, while still recognizing the important role that we, her family, play as we support her along her way.

Interested in getting your own copy of this book? 

• You can buy it here on Amazon or Barnes and Noble.
• You can enter the giveaway on Our Cora Bean to win your own copy!  Enter here: a Rafflecopter giveaway.
• You can enter the Grand Prize giveaway, including an "I love someone with Down syndrome" tote, an advocate coffee mug, a variety of books including The Parent's Guide to Down Syndrome, a t-shirt, stickers and more (over $150 value) enter here:  a Rafflecopter giveaway 

Happy Birthday, Cora!

I'm sitting here, kids asleep, a slight buzzing of excitement coursing through my stomach and chest every few seconds. Tomorrow is Cora's fifth birthday.  Five.Years. Old.  How did this happen?  How did my tiny baby turn into this lovely little girl?  It's happened before my eyes, all the moments stretching into all the long days, the seasons and years soaring by.

This little hilarious, silly, loving, exasperating, strong-willed and amazing little girl...

Sometimes my heart feels like it can't contain my love.  This girl went and made me a mother and turned everything I'd ever known upside down in the most perfect way. 

She lives with joy and shares it with contagious abandon. She loves deep and hard and I am so blessed that she shares that love with me.

Happy, happy birthday, my sweet girl. I couldn't be more proud of you.

Day 31- Halloween

Tonight I took my sweet little birdie family out in the pouring rain.

It was a blast. Cora has been talking about Halloween since last year's trick-or-treating adventure. She's been asking about it for weeks now, and has been practicing saying "trick-or treat."  She said it perfectly to all the neighbors whose houses we visited, along with a polite "thank you."  Ruby was a trooper, trudging in the rain, with her little feathers plastered against her head and her tutu tail drooping down. She said "bye" to a few times, grabbed candy with the best of them, and tucked it away in her little purse.  Oh so sweet.

I managed to snap a few photos of my flapping little birds before we headed out into the pouring Portland rain. I love these costumes. They were so much fun to make.

 

The bird family.

And the out-take. Can't stop laughing at this one.

Happy Halloween.

Day 30- How it Flies

As Down Syndrome Awareness Month (or as some of us like to call it, Down Syndrome Acceptance Month) is wrapping up, I realize that I haven't said very much of what I'd hoped to say. There just hasn't been the time, or sufficient sleep to string thoughtful words together in the small windows when my girls are sleeping and I am not. It has felt overwhelming to post something every day, and so much of what I've posted has been light. I've been trying to put together a way to sum up what I really want to say. But my ability to provide enlightening or profound insight feels flat, and so instead, I want to re-share something I wrote in February of this year, shortly after Cora's fourth birthday. It pretty much sums up our life as it is... busy, messy, exhausting, sometimes overwhelming, and still beautiful.

The other night I had the rare experience of lying down with Cora at bedtime.  Usually I am in charge of the wee-one, who still wants only her mama at night, and has a pair of lungs that can easily keep her older sister from drifting off to dreamland.

I held her little self close, and smoothed her hair, whispering to her made-up-on-the-spot stories about Cora and Ruby and listened to her giggles.  After the days of listening to her argue and yell, always wanting to do things in her own little way, which seldom really jives with the way it works best for me... well, that little snuggle session felt pretty sweet.

And I couldn't help but thinking, "Oh my word, this girl is four, she is FOUR, she is four."  How could four years have already passed mothering this little turkey?  I had to make myself remember her tiny little baby self, tucked up in the NICU, hooked up to her apnea monitor, getting milk through her NG tube, and even getting handed to a kind nurse decked out in scrubs for her little body to be opened up and her heart be made whole.

 

All this time has passed between those moments.  My baby has become my little girl.  My silly, creative, curious, lovely, and sometimes infuriating little girl.  It's a trip, this parenting thing.

It changes oh so fast.  The moments when you feel stuck and overwhelmed, the moments when you feel blissfully at peace, all of them keep flying by.

These days life feels pretty different than I may have thought it would four years ago.  Our days are filled with song and dance, imaginative play, art projects that barely seem worth it they're over so fast, endless cleaning and constant errands.  They're filled with the most incredible little preschool and a very funny baby sister.

 They're filled with a strong-willed little girl who likes to show us who's really the boss.

They're filled with play-dates with new friends, and watching my shy little girl keep mostly to herself and then talk and laugh about how much fun she had after her friend goes home.  They're full of conversations with other parents that aren't always about Down syndrome, and these days often with parents whose own children don't have disabilities.

They're full of way too little sleep for me, a to-do list that never ends, and a feeling of always being stretched too thin and needed too much.  They're full of never-ending runny noses from school, and long rainy days.  They're full of missing my own friends and always telling myself how I need to prioritize my self and my adult relationships, too.

And they're full of laughter and games of peekaboo (or "kaboo!" as Cora likes to say), and hiding under the blankets in the guest room.  Skype dates with family, and long walks in the stroller.

They're full of life.  It's not really what I had pictured it to be.  It's pretty ordinary, largely exhausting, and overall a beautiful blessing.

My life with my awesome big four year old girl, and her sweet little sister.

Day 29- Camera Shy

This cheeky little girl went to school dressed as a ladybug today.

She wasn't too interested in showing her costume to the camera, but was more than willing to check herself out in the mirror. 

You can see the first time this costume made its debut (albeit with a few items in a smaller size) here. My ode today to Throwback Thursday.

9 month old Cora.

And last year on Little Miss Ruby, at almost 4 months old.

Day 28- Because...

Monday as I picked up Cora from preschool, I heard her teacher begin the song to excuse her from class for the day, "Cora was here today, Cora was here today, I'm so happy that Cora was here today."  Cora ran up and gave a high-five to her teacher, lingering next to her as the next child was sung out of class.  The little boy gave a high-five to their teacher, then paused for a second and gave Cora a big hug.

His mom was standing next to me. She smiled and asked if it was Cora's birthday. Usually on the kids' birthday celebration days at school, the honored child gets to choose to give high-fives or hugs to the others as they leave class that day. I told her that it wasn't Cora's birthday, then we said our goodbyes.

Today during pick-up, Cora's classmate's mom approached me and told me that she asked her son why he gave Cora a hug at the end of the day.  She told me he looked at her matter-of-factly and said, "Because I love her."

Seriously. So sweet.  Little moments like these definitely show me that this is the right place for my girl. There may be missteps every once in a while, but Cora is definitely building a community for herself.  And that makes me happy, indeed.

Day 27- Presume Competence