31 for 21: I did it!

I did it.  I posted every day for 31 days.  Yay me!  :)  You may not hear from me for another month, since the challenge is done.  Ha!

I don't know how much anybody learned about Down syndrome ... hopefully, you got something out of this month.  Please know that if you have any questions about Down syndrome or our life, I'd be glad to answer them.  Or point you in the direction of someone who could answer.

A couple of people made some suggestions for other topics - and I'll try to address those over the next couple of months - marriage, a guest post by Emmett, some therapy info and more videos.  I'm open to more ideas!

For now, here are a few highlights from Halloween:

Our kids' costumes: a Kyoshi warrior, a chicken, and a zombie from Plants vs. Zombies.  Emmett was dressed like Mike Brown.

I got the job of giving out candy while Emmett took all three kids around the neighborhood to trick-or-treat.  He's a brave, brave man.

Our next door neighbor is a DJ.  He brought out his party equipment and played lots of house music while people came around.  At some point, a group of three adult zombies did a dance in the street.  Have I said that I love Halloween in my neighborhood?  It's so fun.

When Emmett brought the kids back to the house, pushing Ben in the stroller and carrying Corrie, Ben was totally OUT.  He napped for a while, then perked up again for the later waves of visitors.  I heard lots of sweet comments about the pollito. 

Evidently Corrie stepped on something.  As soon as she got home, she mournfully requested an ice pack. 

Corrie's evening went downhill from there.  By bedtime, Corrie kept telling Emmett, "You just don't understand the position I'm in!" and "I hate living like this!  You're taking all the fun out of everything."  He stayed the course and put both big kids to bed while I medicated and nebulized Ben.

And now I am snuggling with my husband on the couch.  :)

Thanks to everyone who hung in there with me for the month!  I hope I didn't totally annoy all my facebook friends with all the blog posts.  I really appreciate everyone's feedback and encouragement. 

Y'all are a blessing!

31 for 21: It's Corrie's Turn

When I interviewed Evan the other day, I also attempted to interview Corrie.  Here's how that went:

It's funny to see it now, because I didn't want to lead Corrie in any particular direction.  I was curious about her perspective on Down syndrome, but I didn't want to bring it up.  We don't usually talk about Ben being different or special, so it's weird to hear myself asking that question.

After this brief interview, she requested that I make a video of her dancing.  The camera was almost out of batteries, so I had to cut the dance short.  The music is from Vacation Bible School a few years back.  

Can you believe that October is almost over?  This is post #30 out of 31.  I can't believe I posted every day.  

Tomorrow I'm going with some other moms to do a presentation about Down syndrome at a local elementary school.  If you think of us on Wednesday morning, say a quick prayer.  I'm not sure what to expect ... but I am excited!

31 for 21: Nicks and Dings

Bumps and bruises.  Stings and smarts.

Most of the time - 90% - I'm OK (or better than OK) with Ben's diagnoses.  But there are definitely some times, usually the week before a cardiology appointment or check up with the pediatrician, when I feel tense and worried.  When I'm in that kind of heightened emotional state, I'm way more sensitive to comments about Ben or situations involving Down syndrome.

Last week, there were several moments that struck me.  None of them were awful, but they still stung.  A little girl came up to us at the park and gazed at Ben for a moment.  "Your baby is cute," she said.  "Thanks!"  said I.  She took a few more seconds to look at Ben, then cocked her head and said, "His eyes look funny."  Then she ran off to play.

I don't have a problem with a child who innocently makes an observation.  And I didn't see the need to explain to this little girl anything about Down syndrome.  I just said, "Oh, OK," and off she went.  No big deal.  But ... I'm so used to seeing Ben, that I don't notice that he looks different.  It surprised me to realize that something about him looks different enough that a 5 year old would see it.  And that realization nicked me a little bit.

Another morning, I saw a large group of adults from a local adult day care center hanging out at one of our favorite parks.  Many of the adults had Down syndrome.  Part of me enjoyed seeing people hanging out - listening to ipads or talking with friends.  Another part of me wondered what Ben's life will look like in 30 years.  Will he be hanging out at the park on Wednesday mornings?  And it scraped my heart.

At the pediatrician's office, I had to fill out a 9 months developmental assessment for Ben.  I marked "not yet" for most of the activities.  Then, the pediatrician had a physician's assistant shadowing her for the day.  Our doctor and the P.A. were both very professional and welcoming.  Then the doctor commented, "Let's talk about hypotonia (low muscle tone).  This baby should be a good example.  How do his muscles feel?"  The answer, "Soft."  Ouch.  I know it's true, but it pricks.

I have a friend who occasionally uses the word "retarded" in conversation.  I didn't know that anyone still used that word.  She doesn't mean it about Ben or about anyone with disabilities - and I haven't asked her to stop saying it.  But I hear her, and think of him ... and it stings.  

Ben at 9 months.

I have been writing this month for Down syndrome awareness.  I want everyone to know that Ben delights my heart.  He is a treasure and a joy, but parenting a child with Down syndrome is not always something that I celebrate.  Sometimes it is painful.

I wrote this post when Ben was 9 months old.  I wasn't ready to post it then, but if I'm honestly reflecting on the last year, then it's important to remember this.  Nine months was a hard milestone for me.  Not because of anything major, but because of little nicks and dings.  I'm glad to not be in that place right now.

31 for 21: A Halloween Preview

We hosted a Halloween party for our Down syndrome family group today.  It was the perfect opportunity to take our Halloween costumes for a trial run. 

Here's Kyoshi warrior Corrie:

 And here's chicken Ben:

And here's me (I'm going for "farmer with chicken"):

 

Evan was also at the party, but he and Emmett were costume-less.  Evan was too busy bouncing on the moon jump to bother putting on any costume.  We'll say that he went as "sweaty soccer player" thanks to his game this morning.

A good time was had by all!

 

31 for 21: Bloom (a book review)

I've read several book reviews of Bloom lately, and I hate to just be one more in the crowd, but ... it was on my list of books to review - and I'm running out of ideas for 31 for 21.  :)

I have been trying all night to write a review of Kelle Hampton’s Bloom.  It is difficult to review a memoir – especially a blogger’s memoir – because it feels like any criticism of the book (or blog) is criticizing a person’s life.  

From Amazon:

From the outside looking in, Kelle Hampton had the perfect life: a beautiful two-year-old daughter, a loving husband, a thriving photography career, and great friends. When she learned she was pregnant with her second child, she and her husband, Brett, were ecstatic. Her pregnancy went smoothly and the ultrasounds showed a beautiful, healthy, high-kicking baby girl.

But when her new daughter was placed in her arms in the delivery room, Kelle knew instantly that something was wrong. Nella looked different than her two-year-old sister, Lainey, had at birth. As she watched friends and family celebrate with champagne toasts and endless photographs, a terrified Kelle was certain that Nella had Down syndrome—a fear her pediatrician soon confirmed. Yet gradually Kelle's fear and pain were vanquished by joy, as she embraced the realization that she had been chosen to experience an extraordinary and special gift.

I’ll just say it: I think Bloom is OK.  Not bad, not good, just OK.  I’ve been trying to figure out why I didn’t love it, and it comes down to two major issues.  

First, I just don’t relate to Kelle Hampton very much.  Kelle infuses her life with a lot of drama, and I don’t mean that in a bad way.  For example, she prepared for Nella’s birth with hand-designed favors, a birthday crown for her older daughter, and champagne glasses with Nella’s name on them.   She likes to have fairy tea parties with her daughters on the beach. Kelle also uses alcohol to mourn, to relax and to celebrate. Our baby sleeps in a pack and play in our closet.  I’m not very crafty. We don’t drink much. I can’t relate.

The other issue is that I like words better than photographs.  I think Kelle Hampton is an amazing photographer.  Her blog and book are a visual treat!  However, I don’t love her writing.  She’s reeeeaallly wordy.  (And I would probably be the same way if I tried to write a book).

Now, if you are a fan of her blog, you will probably love her book.  And if you’ve never read her blog, let me highly recommend Nella’s birth story.  It is well-written, and the photographs are heartwrenching.  So many tender moments.  In fact, look around her blog for a while.  She has some sweet and inspiring posts - and if you like photography, you'll find lots of eye candy.

Bloom is a fine book, but not one of my favorites.  Check out Kelle's blog first, before you buy the book.

For a different perspective on Bloom, check out this post.

31 for 21: From Grief to Celebration (a book review)

If you’ve been following along this month, you may have noticed that I’ve been reading many books about Down syndrome.   I’m building up a library.  I have always loved to read, and when Ben was born, I started seeking out other people’s stories.  I have quite a list of informational books and memoirs still to read.  My Amazon wish list is looooonnng.

My new favorite new-mom book is called From Grief to Celebration: How One Family Learned to Embrace the Gift of Down Syndrome by Margaret (Gary) Bender.  This bridges the gap between memoir and practical advice. It’s like having lunch with a mom who has been there and done that, who can encourage and give trustworthy suggestions. 

Why do I like it?  The other memoirs that I have read (A Good and Perfect Gift, Bloom, Road Map to Holland) all focus on the first two years of life with Down syndrome.  Gary’s book has the wisdom of years behind it.  When the book was published, Alex was seventeen years old.  Gary writes about the challenges of the early years – of accepting the diagnosis and learning more – but she also addresses my other questions about the future – sibling relationships, school, etc.

Gary frames her story as a journey of words.   She chose ten verbs to chronicle each stage of life with Alex.  The verbs are: Grieve, Research, Incorporate, Promote, Include, Understand, Advocate, Expect the Best, Practice Healthy Skepticism, Plan, and Celebrate (a bonus verb).

“These past 17 years have been an unexpected and beautiful adventure.  As with many unplanned journeys, stages must be traveled before acceptance is embraced.”

I think any new mom gravitates toward birth stories.  “What was it like for you?”  Gary’s story does not disappoint.  She talks about her prenatal care, delivery, and thought process after receiving the news that Alex has Down syndrome.  I grieved Ben’s diagnosis, and I appreciate that Grieve is the first verb Gary chooses.

The next few verbs lead the reader through Gary and her husband’s process of acceptance and then involvement in the greater Down syndrome community.  She gives book and research suggestions, including books that she read to Alex and her classmates in elementary school.  It was helpful for me to see that there are resources out there for more than just infancy and early childhood – as Ben grows, there are books about communication, nutrition, even sexuality. 

“… The research we undertook was one of the many factors that moved us out of our grieving phase.  The more we learned, the more I realized our lives would be fine – just like everyone else’s, only different.”

“We found that by actively seeking opportunities to include Alex, whether they were art lessons, sports teams or school, what we were really doing was tackling Alex’s special needs.  We made her part of our community and, more importantly, ensured we were part of hers.”

The last six verbs offer wisdom about moving forward.  My questions: what will it look like to include Ben as he gets older?  How do we pursue therapy?  How do I know what therapies to focus on and when?  Gary talks through her thought process as Alex grew.  Her family has spent extra time and energy working with Alex on speech, and she explains why: 

“Without basic language skills, many children are excluded from social interactions, which is the most important step in inclusion.”

Ben is one year old; looking ahead at all of the decisions we may need to make about his education is overwhelming!  Thankfully, Gary writes simply and concisely about their choices.  Her matter-of-fact tone makes upcoming IEPs (individualized education plans) seem far less intimidating, and her positive stories about Alex’s team of educators make me look forward to connecting with the staff at Ben’s future school.   I also love how Gary writes about Alex’s relationships with friends at school and in Special Olympics. 

I could write about every chapter in the book, but that would make this review way too long.  Suffice it to say, that I learned something from each chapter in this book, and I wish that I could sit down with Gary and ask her about more.  It's a short book (90 pages) with a lot of good information.

I highly recommend this book!  I also highly recommend Gary's blog, The Ordinary Life of an Extraordinary Girl, where she posts her family and about Alex's life now.

For the rest of the month of October, From Grief to Celebration is on sale for only $3.99 on the Kindle. The paperback is also on sale.

31 for 21: Unwanted

-->

After Ben was born, I learned many things that I did not want to learn.

I learned that the termination rate for moms who receive a prenatal diagnosis of Down syndrome is 67% (which is lower than it used to be). 

I learned that in many other countries, when a baby is born with Down syndrome, he or she is institutionalized right away, kept in a house for babies until age four or five, then moved to an adult mental institution for the rest of his life.

I have haunted “termination for medical reasons” boards online – never posting, but heart breaking to read of women who wanted their babies, loved their children, but who felt that a diagnosis of Down syndrome would be too much of a burden – would cause too much suffering – to the child, to themselves, to their other children.

Babies like Ben are not wanted ... despite the following statistics:

According to a study published in July 2011 by the American Journal of Medical Genetics,

nearly 99% of people with DS indicated that they were happy with their lives, 
97% liked who they are, and
96% liked how they look.  
Nearly 99% people with DS expressed love for their families, and 
97% liked their brothers and sisters. 
Overall, the overwhelming majority of people with DS surveyed indicate they live happy and fulfilling lives.

That's why it's important to talk about Down syndrome ... so a surprised and scared mom and dad can get a true picture of life with a baby who has Down syndrome ... so that baby will have life and a family.

I’d like you to meet some organizations that do good work:

International Down Syndrome Coalition for Life

IDSC for Life is dedicated to serving individuals with Down syndrome from conception throughout their lives. We will achieve this by supporting families who have been given a prenatal diagnosis of Down syndrome.  We direct families to accurate and up-to-date information about Down syndrome.   We extend our heartfelt compassion, and hope and healing to parents who who were pressured to terminate, and ended their pregnancy because of a Down syndrome diagnosis and later regret that decision. 

Reece’s Rainbow

The mission of Reece's Rainbow is to rescue orphans with Down syndrome through the gift of adoption, to raise awareness for all of the children who are waiting in 25 countries around the world, and to raise funds as adoption grants that help adoptive families afford the high cost of adopting these beautiful children.

  

National Down Syndrome Adoption Network

The NDSAN is committed to providing support for families who are considering an adoption plan for their child, and for families who would like to adopt a child with Down syndrome.  The mission of the NDSAN is to ensure that every child with Down syndrome has the opportunity to grow up in a loving family.

And if you have time, I would encourage you to read about this family and their daughter Katie.

31 for 21: (Not Quite) Wordless Wednesday

I've been thinking about that Huffington Post blog post ... you know, the one that says we should make sure that Mom is in some of the pictures.  I'm guilty of taking pictures of the kids and never remembering to get one of myself.  I am also guilty of deleting the pictures that Corrie takes of me around the house (pumping, doing dishes, etc.)  For (not quite) Wordless Wednesday, I figured I'd put up a couple of pictures of me with the kids. 

These are all from our trip this summer:

31 for 21: We'll Paint the Octopus Red (book review)

-->
We’ll Paint the Octopus Red is a children’s book, written about a girl whose baby brother has just been diagnosed with Down syndrome.  It’ s a sweet story.  Emma is not excited about being a big sister, so she and her dad talk about all the things that she can do with the new baby – visit a farm, take a trip, do art projects, etc.  When the baby is born with Down syndrome, Emma wonders if she can still do all those fun things with her baby brother Isaac.  As she and her dad talk about it, they realize that “as long as we were patient with Isaac, and helped him when he needed it, there probably wasn’t anything he couldn’t do.”

At the end of the book, there are questions and answers about Down syndrome.  I wish I had this list when we first talked with Evan and Corrie.  There’s a good explanation of chromosomes.  The questions and responses are simple, and they include some reassurances that may not have occurred to me:

“Nobody knows why some babies are born with Down syndrome, but we do know that it is nobody’s fault.”

You cannot catch Down syndrome from the baby.  “The only way to get Down syndrome is to be born with it.”

“Sometimes people say that babies with Down syndrome are special because they need extra time and help to learn.  But they are also special in the same ways that other kids are special.  All kids, with or without Down syndrome, are special because they have their own interests, talents, and personalities.”

We have only had this book for a few days, but Corrie has asked to read it several times.  It resonates with me as a mom, too, because the dad in the story was a little sad until he took the time to talk with Emma about the baby’s future.  This is an easy book to read, the illustrations are nice, and it has clear, easy explanations for a parent who is unsure of what to say.

I also think this would be a good book to read to a child’s classroom for Down syndrome awareness – or to donate to the school library.  I’m tempted to buy a few extra copies to pass around to other families with older (preschool and elementary-aged) children.

31 for 21: Explaining Down Syndrome to my Older Children

When Ben was born, Evan was six years old.  Corrie was three and a half.  When the kids came to the hospital to meet their baby brother, we didn't mention Down syndrome to them at all.  I didn't know what to say, and I didn't want them to see their brother as someone who was sick or "less than" or messed up or ... anything like that.  And I really didn't want to cry about Ben while I was showing him off.  They were soooooo excited to meet him. 

I don't think we officially said anything to them for at least the first week or so.  Honestly, I don't remember when we actually talked to them - it could have been a month or two later.  I just remember this irrational fear that someone else would say something to them about it.  I wanted them to hear about Down syndrome from me.

I sat down with Evan and Corrie individually. 

I asked Evan, "Have you heard us talking about something called Down syndrome?" 
"Yes." 
"Do you know what it is?" 
"No." 
"Well, let's talk about how babies are made in a mommy.  Babies grow from part of mommy and part of daddy.  Each little cell has chromosomes that help the baby's body know what to do and how to grow.  Usually babies receive 23 chromosomes from mommy and 23 chromosomes from daddy.  How many is that?" 
"46." 
"Down syndrome means that Ben got one extra chromosome, so he has ..."
"47." 
"Right.  That one extra chromosome means that things are a little confused in Ben's body.  He will learn to do all sorts of things, but it's just going to take him longer.  He'll be able to crawl and walk and run and jump - just like you and Corrie - but he's going to have to work hard to learn how to do those things.  So we need to help him!  You can be one of Ben's coaches as he grows."

Note: I don't think it had ever occurred to Evan that Ben wouldn't learn to do things.  I didn't want him to worry about Ben, but I also wanted him to understand why Ben would have therapists and other "helpers" around.

Evan has embraced Ben - and being Ben's helper - enthusiastically!  If Evan is home when Ben is having therapy, Evan likes to sit in on the session and tell the therapist all the things that Ben can do.  He learns the exercises and practices with Ben.

My conversation with Corrie was similar, but I left out all the information about chromosomes.  She just knows that Ben needs to work hard to learn things - and it will take some time.  Corrie has a rougher time with the therapists than Evan.  I try to schedule therapy when Corrie's at preschool, so she doesn't feel like Ben gets all sort of extra, special attention.  Or I save fun activities for her to do when the therapists are here - like playing on pbskids.org.  Corrie likes to participate in therapy, too, but she gets bored.

I think Corrie is more aware than Evan that Ben is not keeping up with other kids his age.  She is more attuned to people, so she notices more.  Evan is kind of oblivious.  As the kids get older, I'm sure we will have many more conversations about Down syndrome.

As it is, I hope that the kids just think of Ben as their little brother - who might need some extra help but will still be able to do things.  I want them to see Ben as more alike than different.  And they do.  I also hope that being Ben's siblings will help them grow in compassion and patience.  I see life a little differently now that Ben is here, and I imagine that Evan and Corrie will, too.

I did look for help explaining things; someone suggested this video.  Evan has asked to watch it several times.  I recently ordered a book called We'll Paint the Octopus Red.  I think Corrie will enjoy reading that one.

Before I wrote this post, I thought I'd check with the kids to see what they could tell me about Down syndrome.  I did not do any coaching or prepping, I just grabbed Evan one day after school.  Here's what he had to say:

I asked Corrie, too, but she preferred that I take a video of her dancing rather than talking.  I might post that one a different day.  :)

31 for 21: Not Much

I got nothing.

It's been a good weekend.  Emmett went on a church leadership retreat, Evan had a soccer game, I drove the three kids around in the Civic until our minivan was fixed.  We hung out at a friend's house on Saturday night and ate pizza and talked. 

Today, we went to church, then came home for spaghetti and meatballs.  Emmett soundly defeated Evan and me at Settlers of Catan in the afternoon.  When it got cooler outside, we cleaned out the garage, drew with sidewalk chalk and played with bubbles.  I have no pictures, because - really - who wants to see pictures of us cleaning the garage? :)

Now I'm sitting on the couch, surrounded by stuff that used to be in the garage.  I need to make some decisions about what to keep and what to throw away.

I just don't have anything to say.

Here are some pictures of Ben in the bath (after the chocolate pudding):

  

31 for 21: Fun with Food

I had some cleaning to do in the kitchen today, and I needed something to entertain Ben.  My to-do list included: unloading/loading the dishwasher, scrubbing some pots and pans, cleaning Ben's booster seat and mopping.  Now that I'm recapping, I realize I still need to mop.  Ugh.

Anyway ... I heard somewhere (I can't remember where - I could have just made this up) that playing with and experiencing foods of different textures would be good for Ben's development.  Yogurt would have been a good choice, but I had no yogurt.  I did have half a box of chocolate instant pudding. 

I made the pudding, put a big glob on the tray and gave Ben a spoon.  Here's what happened:

I got a lot of cleaning done while Ben lived it UP.  I don't think very much actually got into his mouth.  

Needless to say, I added "bath for Ben" to the to-do list.  And once he was clean, I cleaned the booster seat.  :)

31 for 21: Fall Friday Fun

Corrie's class had a field trip to the pumpkin patch today!

I would have taken more pictures, but Ben fell asleep and I had to hold him because I forgot the stroller.  And for the record, Corrie started out this morning with a white T-shirt with a sparkly purple owl on it.  It looked so cute with her striped leggings! 

Then ... just before we left for preschool, she found one of Evan's old Halloween T-shirts.  Bye, bye cute little owl and hello, bony skeleton dripping green goo.

She enjoyed looking at all the pumpkins and was able to pick out a little one to take home.  Sometime next week, we'll take the whole family to choose a big pumpkin for the front door.

31 for 21: Older Kids and Adult Blogs

I think one of the big questions I had when Ben was born was "What will life be like when he is older?" and more specifically, "What will he be like when he is older?"  To be honest, there was one day where I sat by myself and watched a bunch of awareness videos on youtube and just cried.  And cried some more.

Some friends asked questions or made comments:
     "Ben doesn't look like he has Down syndrome.  I think he's got a mild case."
     "Do you know how high functioning he will be?"  or 
     "What will he be able to do?"

For the record, most instances of Down syndrome are not "mild" - you either have it or you don't.  There are 47 chromosomes in every cell of Ben's body.  Nondisjunction Trisomy 21 (which is what Ben has) accounts for 95% of cases.  One percent have Mosaic Down syndrome, which means that the 47th chromosome is not present in every cell.

The thing is, I don't know what Ben will be able to do.  My expectations are high.  Emmett and I were talking last night, and I said that I don't anticipate that Ben will live at home.  He might - and I will gladly keep him with us if this is best place for him to be, but I also expect him to have a life - interests, activities, a job, friends.  I know that Ben's life will be different than Evan and Corrie's, but right now he's only 14 months old ... how am I supposed to know what he'll be doing 20 years from now?  Does anyone know what their kids will be doing in 20 years?

I do know that people with Down syndrome can read, run, jump, do math, ski, swim, dance, act and more.  I am looking forward to seeing who Ben becomes.

One of the things that has helped me feel better about Ben's future are the glimpses I have of other children and adults with Down syndrome.  Here are some great blogs to check out:

The Bates Motel - This was one of the first blogs I found about an older child, and this was one of the first posts.  How beautiful is Samantha?!?  She's in first grade now, and she's reading and doing homework and loving life.  (Although my second grader doesn't really equate homework with loving life - not sure if Sammi would either).

Confessions of the Chromosomally Enhanced - This blogger has two connections to Down syndrome.  Her older sister has Down syndrome, and she and her husband adopted a daughter with Down syndrome.  I have loved reading stories about Aunt Leanne and Josie.  I can't pick just one to link to, so I will send you to the list of favorite Leanne stories.  And I love seeing how Josie and her younger sister interact. 

The Ordinary Life of an Extraordinary Girl -Gary, the writer of this blog is a mom of three kids.  Her middle child, Alex, is 19 years old and has Down syndrome.  Alex is a neat person - she's a skilled athlete and enjoys acting in school shows.  Gary writes about Alex's life now, but she also gives some perspective on her experience parenting Alex through elementary, middle and high school.  Gary has also written a book called From Grief to Celebration: How One Family Learned to Embrace the Gift of Down Syndrome.  It's on sale on the Kindle this month - only $3.99!  I just ordered it and I love it so far.  I'll try to post a book review soon.


There are so many good blogs out there, but these are three of my favorites. 

31 for 21: Wordless Wednesday

31 for 21: Road Map to Holland (a book review)

Road Map to Holland: How I Found My Way Through My Son’s First Two Years With Down Syndrome

By Jennifer Graf Groneberg

This book came recommended by women on the Babycenter Down Syndrome board.  Every so often, someone will ask for reading suggestions, and this is one of the books that is regularly mentioned.

Jennifer Graf Groneberg is a mom of three boys.  Her youngest two are twins, and one of them has Down syndrome.  She writes about the babies’ birth, Avery’s diagnosis, and the next two years of life. 

The book title references an essay written by Emily Perl Kingsley.  She’s a mom of a child with Down syndrome, and she wrote that having a child with special needs is like ending up in Holland instead of Italy (where you planned to be). 

Overall, I enjoyed this book.  I appreciated Groneberg's attention to detail.  She captured moments that resonated with me – from how different relatives and friends received the diagnosis, to meeting another older child with Down syndrome, to starting Early Intervention (therapy and other services), to her growing sensitivity to others around her using the “r” word.  She’s very honest about her feelings in each situation – she openly recounts moments of comfort, shock, fear, delight and even numb avoidance. 

It’s helpful to know that other people have those same feelings and experiences.  I have those moments burned in my mind – when the doctor(s) first talked to us about Down syndrome, when I met another mom of a child with Down syndrome for the first time, when a friend casually used the word “retarded” in a sentence and it stung.  Road Map to Holland plainly says how another woman and family walked through those moments.  I think if I had read it any sooner, I would have cried a lot.  Probably in a good way.

If you are looking for a book that is all happy-happy, this is not it.  This book is honest.  There’s a lot of joy and acceptance, but there’s also some pain and sadness.  It’s all about the journey.

31 for 21: What is Down Syndrome Anyway?

I don’t want to shortchange anybody on Down Syndrome Awareness month.  If you’re following my blog – hopefully, you’re learning something about Down syndrome.  At the very least, I hope you can see that Ben has Down syndrome and he has a very normal, regular, plain old life.  Just like the rest of us!

What is Down syndrome?  Let me give you the nuts and bolts (thanks to the National Down Syndrome Society):

“In every cell in the human body there is a nucleus, where genetic material is stored in genes.  Genes carry the codes responsible for all of our inherited traits and are grouped along rod-like structures called chromosomes.  Typically, the nucleus of each cell contains 23 pairs of chromosomes, half of which are inherited from each parent. Down syndrome occurs when an individual has a full or partial extra copy of chromosome 21.

This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm - although each person with Down syndrome is a unique individual and may possess these characteristics to different degrees, or not at all.” (emphasis mine)

Thinking about his physical development, the biggest surprise for me has been Ben’s low muscle tone.  He was an active baby when I was pregnant - flipping and pushing and kicking all the time.  Even when he was born, he had pretty good head and neck control.  He was rolling over within his first two weeks at home.  I thought he was going to surprise everybody with his muscle development.  But as he has grown, the low tone has become more evident.

Low tone affects speech and feeding - people use cheek and tongue muscles to speak clearly, to suck, to chew.  Low tone affects the digestive system - I could say a lot here about constipation ... but I won't.  Low tone affects gross motor - sitting, crawling, standing.  Low tone affects fine motor - the pincer grasp.

I have never thought so much about all the steps involved in learning how to move your body.  Ben has received speech therapy, physical therapy and occupational therapy at different intervals during his 15 months of life.  He rolled early, but it has taken a lot of time for him to be able to do an army crawl, and he just (yesterday and today) managed to move himself from a lying down position to sitting up.  Hooray!

Sometimes it is hard to watch other kids - especially younger kids - crawling, walking and talking so easily.  But mostly, I am able to appreciate the hard work that Ben puts in ... and the significance of his achievements.  Every developmental step is hard-won and worth celebrating.

Way to go, Ben!