Let’s get started

*Originally published 01/05/14


Not long ago I decided, What the Hell, I’ll do it! I’ll join the…what century is this? and start a blog. Partially because I didn’t see many other folks talking about what we have to talk about: life with an adult child with Down syndrome. 
Apparently Stephanie noticed this too, so she started this site. 
Good Thinkin’!
As you will soon see, we don’t come from a place of all answers; nooooo, we come from a place of still finding answers. Heck, we’re still the discovering questions! So much like the many lovely blogs out there about families just starting out with their beautiful child with Down syndrome, we intend to let you know what we learn as we go. 

Grown Ups & Downs has a permanent website as well. I plan to share here the applicable informative and timely articles. I also look forward to answering your questions and learning from other
parents in the forums.

Let’s get started!

Creating “the road we’ve shared”


I use this drawing as my “profile picture” on most things that I do under the “Walkersvillemom” name.   It symbolizes the sentiment “I Love Someone Who Has Down Syndrome.”

There are LOTS of us out there who do!

So what makes this online community different than the ones that are already out there – lets face it – there are many.  This one is geared toward and focuses on the needs of parents/caregivers who are dealing with adult issues.  There are fewer choices for our specific group, but we need them just as much.  

Our needs are different.  

I have some ideas about what I’d like to see in an online community – but I’m looking for input.  Please feel free to share ideas about what features you think  we should have and what topics you’d like to learn more about / discuss.

Here’s a list of the goals I’ve identified so far:

Plans / Objectives:

  • A place to share pictures and videos of our kids without judgment.
  • Forums to discuss specific topics of interest with the ability to have ongoing conversations and archived information.
  • Access to specialists (doctors, lawyers, policy makers).
  • Blogs and stories that pertain to adults.
  • In depth interviews that allow stories that would not normally be shared to reach a larger audience.
  • News on relevant topics.
  • Ability to advocate on issues that affect adults with intellectual disabilities.

The Philosophy of the community is also a work in progress, but here’s what I have so far – feel free to make suggestions here too!

Together we can create a living history that tells the story of a generation of people who have Down syndrome – who were among the first to be “mainstreamed / fully included” in public schools and now have adult lives, concerns, and dreams.  While we do this, we can support each other by learning, sharing, and responding to each other in a way that was not possible when our children were young. 

Expecting Josh

Where to begin?

Josh was born in May of 1995, feels like five minutes ago in some respects and a lifetime ago in others.  How does this happen?  Where did the time
go?  How did we get here?  A blink of an eye!  Every good story has to provide a little background information!  This is where our story, what we like to call the rollercoaster of Down syndrome, begins~~~    
I was 28 years old, married for eight years with a five-year-old, typical son,
Tim, when Josh was born.  During the course of my pregnancy, we consented for some prenatal testing. Through a blood draw, the lab performed an Alpha-Fetoprotein test (AFP), which I had declined while carrying my first son because of its inaccuracy rate but, for some reason, while carrying Josh, we decided to have the test.  It came back negative for any abnormalities.  YAY!  I called everyone I could think of to tell them that the baby we would have on or around June 15, 1995, was going to be healthy! 
However, on the Friday of Memorial Weekend in May 1995, very much to our surprise, Joshua Michael arrived THREE FULL WEEKS EARLY, weighing in at 8 pounds, 1 ounce, with a cleft lip, Donald Trump sweep-over hairdo and Down syndrome!!  I knew he had Down syndrome the minute they placed him on my chest.  

You see, 10 years prior to Josh’s birth, my cousin, Janet moved to Massachusetts in order to get her son Early Intervention services.  His name was Paul, he was the love of my life (besides Tom who I was dating at the time) and he had Down syndrome.  Tom and I took that baby everywhere we went, zoos, baseball games, friends’ houses, even attended his early intervention classes.  He loved music and we learned how to sing all his favorite songs in sign language with the hopes that he would start to use signs to communicate his needs and wants to his family.  
One very sunny summer day, at my grandmother’s birthday party, when I was 18 or so years old, I had laid out a blanket in the yard, placed Pauly and all his toys on it.  We sat together singing and listening to his music.  I loved talking to him.  I was overcome with love for this little boy and leaned in close to him and whispered, “someday Pauly, I want a baby just like you.”  My mom overhead the comment and turned to me quickly saying, “Karen, don’t say things like that!”  We jump ahead 10 years and Josh arrives, a baby just like Pauly!  Hmmmm, who exactly was listening to my wishes that day, besides Pauly and my mom?   

So anyway, seems I may have digressed there I tad bit.  Josh arrives, we’re crying, the NICU doctor comes in, stands at the side of my bed and says “we think that your son may have Trisomy 21….Down syndrome, but we’re not positive.”  I looked at him and say, “you know you’re not wrong, I know you’re not wrong.”  He reassures me that they weren’t sure and would do a test using blood from the umbilical cord and have the results in a few weeks.  Tom and I mourned for 24 hours, each in our own way.  

Tom had actually arranged for a crew of friends to come to our house over the long Memorial Day weekend to help him replace our roof.  He called to tell everyone that the roof project was cancelled, once we knew the baby was, in fact, coming.  Once Josh was born and we found out he had Ds, I knew exactly what was best for Tom ~~~ go home and put a new roof on our home and that is exactly what he did the next morning!
I wanted one thing, for my entire family to be together.  I NEEDED TIM!  I kept crying and telling Tom to have my parents get Tim to the hospital.  I had spent the last five years of my life with Tim as my only child and he was my best friend.  We did everything together, including (all of a sudden at the beginning of my pregnancy) going back to church, attending mass every week, just he and I, sitting in the same pew, saying the same exact prayer:  “Please God, let our new baby have 10 fingers, 10 toes, and a healthy brain.” Week after week after week, that is what Tim and I did every single Sunday.  Why, all of a sudden during my pregnancy, did I find the need to be back in my church?
My mom and dad arrived at the hospital with Tim in tow.  I placed Joshua up on my shoulder facing away from Tim as he scurried to the side of my bed.  I wasn’t hiding his Down syndrome, but I was hiding his cleft lip.  I said, “Tim, you know how we’ve been going to church and saying our prayers every week?”  He eagerly, replied “YUP!”  I continued, “well, our new baby has 10 fingers and 10 toes, but we don’t know how healthy his brain is going to be, because he has Down syndrome.”  Tim’s response was immediate and emphatic, “I don’t care, he is my baby brother, CAN I HOLD HIM NOW?” At that moment, I knew this was the first step in our healing and letting go of what we thought our life was going to be, allowing a change in our perception of how things were going to be and knowing that things were going to be okay!

A few hours went by and a nurse appeared in our room, telling us it was time to “try to feed him.”  She continued, “babies with Down syndrome usually have a hard time sucking, so I’m going to go get you a special nipple to try.”  Ummmm, what?  What, hang on…..I thought to myself “we’re already treating him differently?  We’re already making an assumption that he can’t do something?”  Then I finally got the words out of my mouth – “Let’s try a ‘regular’ nipple first and if he can’t do it, then we can switch to the ‘special’ nipple!”  She thought that was a fine idea and my instinct to advocate for him was born, the second sign that EVERYTHING WAS GOING TO BE JUST FINE

I won’t lie, there have been many ups and many downs ~ just like a rollercoaster ride.  BUT for anyone who has taken a ride on a rollercoaster, at the end of it, the adrenaline is pumping, you’re smiling, laughing, you can’t stop talking about it, maybe a bit sick to your stomach but, for the most part, IT WAS A VERY EXCITING RIDE!!

The online community by and for parents and caregivers of adults who have Down syndrome