Porter's Christmas Presents

Everyone puts a lot of thought into Porter's presents. Presents that can make learning and working hard more fun not only help him grow stronger, but they keep him motivated. Here are this year's Christmas presents, and their purpose.

1. Imagine Elmo. This is Porter's favorite Christmas gift. We love it for a few reasons. First, Elmo asks Porter to follow some one and two step directions, like "Prince Elmo says tickle Elmo's tummy." We're working hard on following directions, so having one of his favorite characters ask him to follow directions is very motivational. Also, from a fine motor perspective, switching Elmo's hat requires Porter to use two hands...one to stabilize the toy and one to remove and replace the hat. 

2. JumpSmart Trampoline- This one was recommended by Porter's PT and works on core strength and jumping. Since Porter has very low muscle tone, the handle bars help him use his stronger upper body to help him strengthen his weaker lower body. The trampoline also has a few different music options (including the option to turn the volume up or down...hooray!), which are very motivational. Sister also loves this toy! It does have a weight limit of 80 pounds, so it's life span is limited, but it should really help him over the next few years. 

3. Fisher Price Drum Set Here's another one that works the core. Porter must actively engage his entire core to sit on the stool and play. He uses so many different muscles to push the foot pedal. And, it's so motivational- who doesn't love to make loud noises? 

4. Melissa & Doug Latch Board- this one is all about the fine motor control. And, Porter surprised us by figuring out how to open every latch! Each door has a number and animals to count inside. We're able to work on numbers, counting and colors along with fine motor. 

5. Bristle  Blocks- The set we got has people and wheels, which has made building extra fun! Bristle blocks offer sensory input, which means that Porter is more likely to play with them for a little longer. Lately he's been building birthday cakes and pretending to blow out the candles by himself. He's also been loving the cars that daddy builds! He requests trash trucks. Luckily he's got a pretty good imagination :) 

For a point of reference, Porter will be three in February. He's really enjoying these gifts! We recently cleaned out his play room, retiring many of the "baby" toys and sending them on their way to cousins. His ball pit (inflatable pool filled with balls) and climbing blocks stayed, but we made room for the new toys and he seems to be pretty happy with the results!

Advent

It's pretty clear we've seen a lot of Santa this year. So, it's also important that we make sure the kids stay focused on the true meaning of the season. We have a number of Advent activities going on in our house as we count down to Jesus' birthday. Penny is really into Advent this year. Porter doesn't quite understand everything yet...he says "baby Jesus" and plays with the Fisher Price manger set, but I don't think he fully understands most of what we've been doing this year. 

We'll start with our kid-safe Advent wreath. Penny can't wait to put a new candle on each week. 

Next up, our Advent calendar that builds a Nativity scene. Each day in December, we add another piece of the Nativity. Penny let me put Joseph on for my birthday, but otherwise, she's taken this responsibility pretty seriously and puts up the day's piece before she eats breakfast. 

We've got a Chocolate Advent Calendar in the mix. Porter has discovered a love of chocolate. And, an added OT bonus activity in punching out the doors :) 

This year, we've added a tree in our attic that is being decorated a little each day.

Each day we add a little ornament book from The Story of Christmas. It's really helping Penny to understand the pieces of the Christmas story. 

And, each day we add an ornament from our Advent house. I got this house before the kids were born. It's been well loved since Penny was born, so a few doors have come off their hinges, but it's still one of Penny's favorite parts of Advent. Each door holds an ornament, which she places on the tree. 

We've had fun counting down the days to Jesus' birthday!

Merry Christmas!

Merry Christmas 2014! 

Love, The Thompson Family

#PassTheABLEAct

We've been active in voicing our views on the ABLE Act, especially to our senators and representatives. I've been tweeting up a storm, emailing, making phone calls and receiving all the updates from the NDSS. 

The ABLE Act stands for "Achieving a Better Life Experience". The bill will allow families who have a child with a disability to save for their long-term care through 529-style savings accounts.

One of the senators from our state, Sen. Robert Casey Jr., was a key sponsor of the bill. So imagine my surprise when the other senator from our state, Sen. Pat Toomey, voted against the bill. 

Yesterday, he received this note from our family: 

Dear Senator Toomey,To say I'm disappointed in your "Nay" ABLE Act vote is an understatement. During your campaign, I believed in you. I've heard you talk about welcoming all children into the world and have lived that message, as our son Porter was born with Down syndrome almost three years ago. We found out early in the pregnancy and while the medical community pushed for termination and talked about the awful prognosis, we believed that he deserved life. Almost three years later, our son is amazing. He's the best thing that happened to us! We've met so many amazing people and have become part of a community knit together by an extra chromosome. We have learned much about how to best enable our son to live an active and productive life. We've learned the law. We set up a special needs trust shortly after his birth. But there are so many families in our situation who don't have the knowledge, who haven't been educated. Most of these families are from low-income areas. Why should their children not have the opportunities that our child has? The ABLE Act is a small step in leveling the playing field for some families. It's not the end solution, but it's a start. I struggle with reconciling how you can support all life, but not support your disabled constituents. If the opportunity should arise in the future, we would love to meet with you to discuss. There is no doubt that the system is broken in so many ways. Our experience with Early Intervention and now, as we transition into the Intermediate Unit, has shown how effective and ineffective some agencies can be. Change is needed. We'd be very happy to become actively involved in effecting that change. 

I haven't received a response other than the form template response and am not sure if I ever will. I'm just so happy that the majority voted for this bill. And I'm hopeful the President will sign the bill into law soon. One small step to help make the future better for all Americans with disabilities! Because their futures should be merry and bright! 

Oh Christmas Tree! 2014

We took our annual trip to Varner's in Collegeville, PA for our tree. I'll let the photos do the talking, but we had another great adventure as we hunted for the tree. We ended up with a 13.5 foot white pine. She's gorgeous. And we have yet to finish decorating, so we'll have to post an updated photo later this week. In the meantime, here are some photos from our tree-hunting adventure. Both kids were really into it this year. Porter especially loved the horses. And Penny looked forward to hanging out with the Nativity scene before we headed home. We just barely got the angel on. The ladder was needed to string the lights. We currently have ornaments on the bottom 2/3 of the tree and need to pull the ladder back out to finish off the top :)

 

  

 

Santa! Santa! Santa!

Hey Santa! We've had so much fun visiting you this year! We saw Santa at the mall with Grammy & Pa.

We saw him at the Down syndrome holiday party. 

We saw him at Chocolate World! And at Daddy's work.

 

We saw him with our friends at brunch. 

And even on the train!

We're all smiles this year and Porter is very intrigued by Santa's beard. So far, Penny has just asked for "Frozen stuff" and Porter has just said "Hi Santa!" about a million times. I was surprised to find that Penny actually enjoys candy canes. I'm also surprised that Porter has not yet tried to yank on Santa's beard. So far, it's been a magical Christmas season!

Down syndrome- Lessons Learned...Birth through 6 Months

I'm frequently asked for recommendations on things and before I loose knowledge, I thought it best to start documenting. Here are some things we learned early on that tremendously helped Porter. We hope you may find them helpful too! (In addition, I would encourage all families to become familiar with their local Early Intervention services and with The NDSS...they have many helpful resources for new parents).

• Low Tone & Positioning- When Porter was first born, we were concerned about his ability to keep his airway open in certain positions. We quickly realized that he wasn't strong enough for the bouncy seat or swing, as his head would tuck and it would become difficult for him to breathe. We wanted to help him grow stronger. 
• We learned about "midline" and  how kids with low tone tend to "splay" or let their arms and legs fall open. We also learned that Positioning (including side line) plays a role in helping to minimize splaying. 
• Tummy time is extra important for our kiddos. At first, they may not tolerate typical tummy time, so you can learn to adapt and help them grow. Position them on your own chest, or prop them with a rolled towel under the arm pits. Provide motivation (a sibling, a favorite toy, or your own face) to keep them focused. Here's a great resource with more ideas. 
• Feeding- Porter didn't nurse well at first. He took 45 minutes to drink two ounces of pumped breastmilk from a bottle. After working with OT and Feeding Clinic workers, we found out he was a disorganized eater. He couldn't suck, swallow, breathe in the proper pattern. He had reflux. We worked hard to help him eat better with lots of trial and error. Dr. Browns bottles worked best for Porter. By five months, he had eating figured out and became a champ at breastfeeding. I'm so glad we stuck it out! Here are some other things that helped us:
• Oral support made a big difference for Porter. Guidelines for feeding premature infants are often helpful for children with low muscle tone. This article includes a section on oral support, which helped Porter increase his milk intake during the first few weeks of life. 
• Oral motor protocol is huge for our kiddos. We were lucky enough to learn from other families of Talk Tools early on and to find a speech therapist who was Talk Tools certified. While your infant isn't necessarily ready for their protocols, now is the time to become educated. We had our first speech consult through EI around six months, only because we fought for it. Porter has relatively good lip closure and minimal tongue protrusion because of the protocol. In the infant stage, we did start to do some wiping of his face with a thick was cloth to raise awareness. We also did some "oral motor exercises" and Gum Massage with our gloved fingers inside his mouth at this stage (lip and cheek stimulation) that we learned from our speech therapist, before moving on to using the Summer Infant Gentle Vibrations Toothbrush to build awareness. 
• Here is a great Guide on Breastfeeding and Down syndrome
• Sensory- When he was first born, Porter needed some assistance to build sensory awareness. While he immediately took the the water at bath time, he needed help building body awareness and sensory exposure.
• Infant massage- We met Porter's PT while she was training in infant massage. The courses she took were based on this book. For Porter, massage was enjoyable and it helped build body awareness. When we started, he would pull away if you stroked his arm. After about a week, we eliminated that. He was able to relax and he was able to have more comfortable bowel movements. 
• Texture play- it's so important for our kiddos to experience textures. We read Fuzzy! Fuzzy! Fuzzy! by Sandra Boynton every day. We also received a cool set of sensory Touch & Feel Flash Cards that we've used from early on (they've become part of our speech arsenal as well).
• Mirror play- this kid never met a mirror that he didn't love. It's so motivational to see yourself. And, it builds body awareness. 
• Down Syndrome Groups- get involved! It's the best thing you can do for you and your family. Our locals Down syndrome Interest Group has been invaluable. We turned our diagnosis story into a story of hope pretty quickly with the help of some amazing families. We've learned so much from their experiences. We're inspired by their children. If you're not ready to get involved in person, find a group online. There are a number of Facebook forums that provide families with great information. 

A Visit From Grammy & Pa

Grammy & Pa came for Thanksgiving. Penny takes these visits very seriously...she has a list of favorite things she likes to do with them...baking, reading, taking Grammy to dance class, playing pretend. She got started as soon as she could...she & Grammy baked brownies on the first night of their visit :)

Porter helped too! He loves to help in the kitchen!

As we got ready for Thanksgiving, they made cookies and pies and all sorts of wonderful things together!

Some of their favorite memories are made in the kitchen :)

And who knew cookie cutters could be such fun...Penny & Pa made up a game with the fun new gingerbread cut outs.

Grammy has patience for miles!

They had a blast!

During their visit we took a trip to Hershey.

We had never been there for Christmas before...it was awesome!

We toured Chocolate World and made a few friends.

We saw Santa!

And got treats!

Then we headed over to the park for some fun.

They had so much fun measuring up.

And picked their favorite candies!

They loved the rides. It was the first time we've been able to put Porter on a ride alone with Penny and boy did they have fun!

Beep Beep!!!!

The lights in the park were beautiful!

And the Sweet Lights drive that followed was so cool! We had a great day and a great visit! Thanks Grammy & Pa!!!!