Thursday, March 27, 2014

Preparing Our Little Observer to Crawl

Children with Down Syndrome get to do the same milestones that most other children do, like sit, crawl, and walk.  However, because of their low muscle tone as well as loose ligaments, these milestones often happen a little bit later than they might for other children.  

We’ve read in a number of places about children with Down Syndrome generally being either motor-driven or observers.  Here's a nice explanation by physical therapist, Patricia Winders:

“Children who are motor-driven tend to be risk-takers. They like to move fast and tolerate new movements and positions. They do not want to stay in one place and dislike being stationary. Children who are observers are more cautious, careful, and want to be in control. They prefer stationary positions and are easily frightened when learning new movements.”
While I’m always cautious about potentially oversimplified categories, it's as if Ms. Winders knew James personally when writing her observer description.

From very early on, James looked straight into the eyes of the person who was holding him, analyzing.  This child can win any staring contest.  He’s constantly watching, thinking, and listening (James can't get enough of language, books, and music!), but very, very slow to make a move and not thrilled when anyone asks him to make a move that he doesn’t want to. 

So we’ve done a lot of gentle pushing every day without (too much) frustrating. We try to find whatever motivates him the most, like snacks and things that shake, light up, and sing, and use that as a springboard to work on the next skill. If he starts crying while doing something related to gross motor movement, we’ve learned to make sure to calm him before getting him out of the position, so he doesn’t associate crying with getting out of doing things. These babies are tricky little people!

With Thomas being a PT, we thought gross motor skills would come very easily and quickly, but James has shown us that he's simply interested in other things right now, and he'll move when he's feeling ready.

The "Safe Zone"

James been a really solid sitter since he was around 10 months old, and he’s very content just like that. We refer to sitting as his "safe zone."  We’ve been trying to motivate him to move in and out of sitting through reaching for different toys on both sides of him.  

He stares at these toys, sizes them up, and decides if it’s worth taking a risk. 9.9 times out of 10, the answer is no. So then we do some hand over hand strategies with him to help him get to the toys and help him learn to get in and out of sitting by himself. Like a rubber band, he very quickly moves right back to where he was. 


It really doesn't get old for us!

Pre-crawling activities

So what do we do while we wait? SO many fun things! We could go on and on, but here are just a few from his wonderful physical and occupational therapists, including his Daddy PT:

1. Physioball/peanut ball- We have lots of fun doing tummy time on these balls, and it's a nice soft place to take a break when he wants to put his head down.  We can also roll back and forth to put weight on his feet, knees, or hands while we play!  The more we can get him to bear weight, the better. 

2. Playing on the steps- While this is something we might want to avoid in the future, for now, it's great! We can put toys or snacks a couple of steps above where James is kneeling to motivate him to bear weight on those knees and REACH up with his hands and his body. Cheerios and Puffs seem to work every time. 

3. Consecutive rolling- James has just started to really get this down! We tease him with his favorite toys across a room to motivate him to get to them.  It's great for him to see that moving gets him to something that he wants.

4. Using his mattress as a wedge- One of James' physical therapists has a nifty wedge that she uses that lets James sit on an incline and forces him to sit tall, so he won't fall down.  We've recreated this wedge at home with his crib mattress and the boppy pillow under it, though any pillow will do. While he sits (and works), we sing songs, read books, and blow bubbles together. He doesn't even remember that he's working.

Nice, tall posture!

5. Tummy time with reaching- To crawl, these babies have to be able to support their weight with one hand, so we stack toys on higher levels for James to practice this skill with both hands.

6. Time on all fours- We try to get as much time on all fours as possible, which is a little hard since he is very effective at getting out of it. BUT this kid is obsessed with listening to VeggieTales songs, so we've started putting on a 3 or 4 minute YouTube song clip on our phones or Kindle for him to watch while he stays on all fours, and we rock him back and forth.  It distracts him enough to do it for longer periods of time until it's a bit easier!

Larry, the cucumber, is a BIG motivator for our little guy.

We try to make all of these things feel like play. Again, just a few, but if you have any other ideas that really clicked with your little person, we would LOVE to hear about them!

Focusing on the process and on strengths

Though it used to bother us that James is on the later side with movement, we're learning more and more to focus on the process and not the product...the journey, not the destination...the same lesson we haven't managed to learn quite yet.  It was a New Year's resolution, in fact. :) Thank you, James, once again, for being such a great teacher and allowing us to see all of these perfect moments that we might otherwise miss. 

We're also learning to really focus on his many strengths. For example, he's a smart little cookie, and he is showing us that he's beginning to truly understand what we say.  Our current favorite is asking him, "hug?" and waiting to see if he greets us with open arms or puts his head down, if he's busy.  He's also starting to use baby sign language to show us his thoughts! He's consistently signing when he wants "more" of something, and signs for "please" and "ball" are emerging! We can't wait to see what's next. 

James has allowed us to appreciate every single step along this wonderful journey and given us the opportunity to have a HUGE celebration with each new skill gained.

Most importantly, he also gives the BEST hugs..after he's thoroughly observed you. :)

Thursday, March 20, 2014

Welcoming James

Waiting for good news

It was the spring of 2012, and Thomas and I had been hoping for an addition to our family for a little while.  I was in the third year of my PhD program in education, and Thomas had just finished his doctorate for physical therapy the previous year. We were trying to wait to extend our family until we felt like all of our ducks were in a row.  With my dissertation proposal coming up, we thought this might be the right time! And like many who are excited for what they think is the right time, we were sad to find that each month, there was no baby. Also like many who are waiting, each month that goes by can be absolutely crushing. The waiting we experienced was nowhere near the pain that other couples have had to go through, but it made us really appreciate the sensitivity of this issue.

One Saturday evening we decided to attend church vespers and visit with the Metropolitan Panteleimon of Antinoes who was serving there (for all of you Orthodox Christian folks...or anyone who appreciates hearing a good miraculous healing story, see his!).  I told him about a lot of the negative feelings I was experiencing during this process.  After acknowledging these feelings, he told me not to worry and mentioned that when praying, I can always ask for the intercessions of Saint Anna, Mary’s mother.  

After seeing him, Thomas and I started opening up to others and hearing stories from other folks who had walked this walk as well as taking the Metropolitan's advice to ask for the intercessions of Saint Anna while praying. We started feeling more positive and simply taking it one day at a time. Fast forward a few weeks, and Thomas and I went to one of our favorite places to spend an evening—The Sacred Monastery of Saint Nina. The mother abbess, Mother Ameliane, was having some trouble with her ankle, and Thomas offered his physical therapy skills to help in whatever way he could.  While he worked, we chatted and as always, took in every word that Mother Ameliane said.  Incredible wisdom flows from this remarkable woman. (For another miraculous healing story, go visit Mother Ameliane!)

When it was time to go, Mother Ameliane asked one of the sisters, Sister Ignatia (who also happens to be the biological sister of a dear friend of ours), to grab a thank you gift for us.  We were first handed a beautiful icon of the Theotokos (Mary) with the Christ child, and Mother Ameliane then handed me a small paper icon. Before I looked at it, I knew who it was.  She placed the icon in my hands, looked straight into my eyes, and said, “It’s beautiful, isn’t it?” There was Saint Anna with her daughter, Mary.

Complete chills. I will never forget that night, walking out into starry sky on the grounds of the monastery.  “Well, that’s interesting,” Thomas laughed as we got into the car.  I replied, “I’m pretty sure I’m pregnant.” Like all little ones, we knew God for sure had His hand on this little being.

Sharing the news!

That was proved true a couple of weeks later, when I woke up in the middle of the night, too excited to wait until the morning to take a pregnancy test.  Thomas woke up, too, and after the confirmation, we stayed up talking and laughing for hours, planning all of the fun to come.  Thomas finally went back to sleep, and I tried, but  too excited, I decided reading baby books would be time better spent. 

Shortly before the first trimester came to a close, we had a blast telling family and friends the good news. We decided to stick a foiled covered pacifier in a cake for both of our families and watch everyone’s faces! We talked baby names and what we thought the gender of the child might be.  After one night of joking about celebrity baby names, we affectionately referred to the little fetus as “Goat Cheese,” to the chagrin of the grandparents. :) 

Maria with her mom and sisters, and Thomas with his mom after finding the pacifiers in the cakes!

Screening for the "risk"

When going to one of our first OB appointments, our doctor asked if we’d like to do the triple screen, which can tell you the “risk” of Down Syndrome. (Our first experience of the negative framing of DS in the medical community.) We asked if there was a reason, aside from deciding if you were to keep the baby, and she mentioned it can be helpful to know in case there is a heart or intestine issue, so you can be prepared at birth to be at the right facilities. We went ahead with the screen and didn’t think anything of it, aside from the technician having trouble getting the neck measurements, as James wasn’t super interested in cooperating at the time! 

A week or so later, I saw a missed call from the OB with no message, and the red flags went up.  I tried to call back when the office was closed, and worried the entire evening about what the call could possibly mean.  The next day, right before walking into a meeting with one of my colleagues, I got another phone call from one of the doctors from the practice who I had not met—“I’m just calling to let you know about an increased risk of Down Syndrome with your baby. Do you have a paper and pen to write down information?” 

I’m sorry? Who are you? What did you say?

I fumbled to grab a pen and write down the information for the Maternal Fetal and Medicine Center (MFM), hung up the phone, and bawled my eyes out to my friend and colleague, who graciously took over meeting duties and told me to call Thomas.  Thomas and I spent the rest of the day analyzing how the technician probably just didn’t get the accurate measurements and how with our age and no family history of Down Syndrome, the chances were extremely low. 

We made the appointment at the MFM, and came in prepared to retake the measurements and get everything sorted out.  When we met with the genetic counselor, she calmly told us it wasn’t the measurements, but my blood work that was the biggest indicator—with a chance of 1/21 that the baby had Down Syndrome, the chance that a woman who was 45 years old would have.  The blood drained from our faces once again.  She told us about our options—having an amniocentesis, with a small risk of miscarriage, or a new blood test that had just come out that could assess with 99.1% accuracy.  Thomas and I didn’t want to chance an amniocentesis, but we debated the blood test, thinking maybe it would be helpful to know so we could be prepared.  We decided to go through with it that day.  We were told we would receive the results in two weeks.

That night, I saw Thomas cry for the first time ever, and we choked back tears telling our families and friends about all that had just transpired.  Everyone was worried---worried for us, worried for the health of the baby, worried that this pregnancy was not going the way it was supposed to.

Waiting for the unexpected

Then it was time to wait.  Interestingly, that week, we both just had those gut feelings that this was happening, with some subtle signs to help along the way.  As the week progressed, with the support of each other and family and friends, we were okay with it.  Expectations just shifted a bit. 

The genetic counselor called a week earlier than expected while I was working from home, and asked if it was a good time for me to talk.  That was my answer right there.  She shared the news of the test and asked me if I had someone to talk to, because it was going to be a hard day.  I guess I sounded okay on the phone, because she continued to pry about how I was feeling and what my plans were for the day.  By the end of the conversation, I wasn’t okay anymore.  I wasn’t about to share the news with Thomas in the middle of his workday, and everyone else was busy or at work.  I took a chance with my youngest sister, Elyse, who was in college. She picked up, and was immediately alarmed at my bawling, and I shared the news.  Her reply? “Maria, we talked about this! It’s gonna be great!"  How right she was.

My best friend, Lindsay, came to spend the rest of the day with me after hearing the news, and we waited until Thomas was heading home to share.


The next day, Thomas and I took a trip to Williamsburg for a belated anniversary celebration, but we ended up spending almost the entire weekend on our phones googling information (don’t do this!), and reality started to hit a little bit---low muscle tone, potential heart defects, GI issues, speech delays, feeding issues…the list went on.  We together made a decision early on that we had to do our best to be informed but not caught up in all of the information out there, especially since a lot of it was framed so negatively. We did our best to focus on the positives---family members helped immensely by sending us articles, resources, or really adorable videos---we started making connections with very positive people. And we felt super blessed to live in a digital age, when we could connect with people who also had children with Down Syndrome, even if they lived so far away. (Check out Noahsdad or My Little Sister Who Happens to Have Down Syndrome

The months went by, and things didn’t really get less crazy.  We decided it was time for a move from Maryland to Pennsylvania, we tried to sell/rent our house, Thomas switched jobs, I had to finish and defend my dissertation, we went every month to the MFM to monitor our little guy’s heart, as they spotted a potential defect, and we had to find a new place to live.  

Bonus of visiting the MFM each month…we got updated 3D pictures of our little guy each time! AND we found out early through the blood test that he was a boy!

Since things were a little hectic, we decided not to jump into buying another house until we were certain we were in the right place. We finally found a rental house in November and were set to move mid-December, right as our tenants were to move into our old home.  However, since we were both finishing up work in Maryland, we did a LOT of back and forth and living out of suitcases. God bless the many family and friends that let us stay with them during that crazy time!! When we went to live in our new rental home over Christmas, we both got sick, later to find out there was carbon monoxide in the house from a chimney blockage.  Time to move again! 

At this time, with the baby due March 14th, I was either making a dent in couch while working on my dissertation or waddling somewhere for a snack. I told Thomas that I didn’t care where we lived, as long as we could breathe there, and I feverishly worked on my dissertation on my parents’ couch.  We found a home and moved in January 15th, just in time for Thomas to start his new job beginning a new clinic. I defended my dissertation on February 11th, and we finally worked to make sure things were ready for this little guy who was about to change our lives!

During this time, we sometimes wondered if the test was wrong..if our baby boy didn’t have Down Syndrome.  When we first found out the news, it felt like we had lost a child.  Now that we had adjusted to the news, if someone told us that our baby DIDN’T have Down Syndrome, it felt like we lost another child.  One night while praying, it took Thomas to say, “He’s the same child, regardless of if he has a diagnosis or not.”  As my sister, Christine, said when I told her the news, “Goat cheese is still goat cheese!” It was time to focus on the baby and not the diagnosis.

The arrival

On February 21st, I tried to focus for some dissertation revisions, went to get a pedicure with my mom, and met Thomas at my godmother’s for dinner.  Then at 2 am, I woke up, knowing that something was happening.  We got dressed and ran over the hospital, only to be sent back home. I was terrified of the hospital sending me home again, so Thomas, who was amazing, coached me through most of labor at home.  When we finally braved the hospital later that afternoon, I was 8 centimeters dilated and definitely not going home this time! On February 22, 2013 at 6:50pm, the most perfect baby we had ever seen in our lives life was born. We named him James Thomas, and he was ours. We were in love.