March 21, 2013

3:21

Today is March 21st, 3/21. For the past 7 years or so, people around the world have been celebrating 3/21 as World Down Syndrome Day. 3/21 was chosen to represent the 3 copies of the 21st chromosome which is the defining marker of Down Syndrome (Trisomy 21). Last year, it was officially recognized by the United Nations, and the awareness of this special day has started to spread in earnest. 

We aren't asking for money. We aren't asking you to walk or run or climb a mountain. We aren't asking you to sign a petition or to call your congressional representative. While those things are helpful in the bigger battle we face in making sure our children and members of the DS community are taken care of and given a voice, that's not what today is about.

World Down Syndrome Day is just a day to learn about and appreciate those among us who carry  this extra chromosome. Down syndrome is a complex genetic condition that carries with it a lot of misunderstanding and outdated stigmas. So, take a minute today to brush up on your facts. Check out the National Down Syndrome Society's efforts to help spread the love (and info) about Down syndrome. 

And while you are at it, maybe throw on a yellow or blue shirt today, write 3:21 on your hand, talk to your kids about what DS is, and spread a little love of your own.

We spread some love this morning at Luke's awesome preschool.

And we represented in our 3:21 gear (the yellow shirts are from Rhyme Clothing and the blue ones were homemade), even though Luke refused to sit for a picture. 3 year olds. Sheesh.
We also had friends, both near and far, help celebrate with us by sporting their yellow and blue. It always makes me feel amazing to see the love on social media as people change their profile pictures, or share a video, or a link helping raise awareness about Down Syndrome. At this point, my feed is full of it. But not so very long ago, I was completely unaware and misinformed about what Down Syndrome is and what it's like to live with it. So when others, who only know because of their connection to Sam, share information with their friends, it makes me so hopeful that Sam will one day live in a world where Down Syndrome is understood and accepted.


If you are looking for a way to share with older children or adults what Down Syndrome is, this video is an excellent tool. Because just like they say in the video, "When you understand, you can accept."



Happy World Down Syndrome Day, everyone!

March 3, 2013

Doing Something Extra

A couple of weeks ago, we had Sam's 6 month review of his IFSP. As we slowly and methodically went through each goal and desired outcome, it was obvious that Samuel has been really progressing these past 6 months. Some of his goals sounded humorous when paired with our new realities.

For example: Goal = "Samuel will be able to sit up by himself to reach for his toys." Reality = "Samuel can crawl through two rooms, pull himself up and over the side of the bath tub to reach his bath toys."

So, as we went through our plan, I did a few internal fist pumps and then helped draft new goals and modify the ones we were still working on. I was initially hesitant to put much effort or thought behind the IFSP the Early Intervention coordinator made us put together. Our coordinator was wise and thorough with her job, but in those early months when it took all my focus and energy to just breath through every appointment and specialist we saw, I just didn't think what she was doing was important. I was wrong. It's been very helpful and rewarding to make these goals, and I always feel lighter after we check one off.

About thirty minutes into our meeting, Sam's feeding therapist showed up for his session and to add her two cents to his evaluation. This is what I had been waiting for. As I pulled leftover chicken pot pie out of the fridge and grabbed his honey bear cup from the counter, I was pretty giddy. His therapist and I had been discussing Samuel's feeding goals and progress for the past few weeks. Over the past 7 months, Samuel has done a complete 180 with all of his feeding issues with the exception of his aspiration issue, which he is just going to have to grow out of. As I placed his lunch on his tray and joined the meeting again, his therapist was telling our coordinator that Samuel had met all of his goals and she was ready to discharge him from feeding therapy.

!!!!!!

Now, if you haven't been reading along for the past 18 months, you may not quite get the significance of that last sentence. We have been seeing a speech therapist for feeding issues almost since birth. Sam and I have gone through weekly sessions almost every single week since he was 4 months old. The first year was so incredibly frustrating. We tried everything and got no where. Our first therapist felt she had done all she knew to do and dropped us from her case load after about 7 months. Our current therapist picked us up last summer and squeezed a 25 minute window out of her already tight schedule for our weekly visit. I have been so incredibly grateful ever since. Not only does Sam adore her (like, seriously. He's hardcore in love with her.), but she was so helpful in identifying his aspiration issues, which not only helped him drink better, but also kept him so much healthier this winter. She turned around a situation that was leaving me a frustrated, teary mess on my kitchen floor on a daily basis.

Today, Samuel ate yogurt and cheerios for breakfast, followed up with a granola bar for a snack during church. He had part of a peanut butter and jelly sandwich and pureed fruit for lunch. For dinner, he ate broccoli, chicken and rice casserole. Basically, he ate everything else the rest of us did today. 6 months ago, I had no idea that was even going to be possible.

So often, when I get overwhelmed by that extra chromosome, I get lifted up by the amazing people who have come along side us in the journey. The therapists who knock on our door and say, "I can help." The nurses who showed us the way back in the very beginning. The service coordinator who knows what you need and how to get it to you, even when you want to tune her out. The other families who welcomed a child with DS into their homes (who I guarantee did a celebratory fist pump with me a few paragraphs ago) and who have welcomed our family into the club. We aren't alone and I will be forever grateful.

You may have noticed that I recently added the NDSS's Do Something Extra button in the side column. Last year, I blogged for the 21 days leading up to March 21st, which is World Down Syndrome Day. This year, we are still going to be buying our 3:21 shirts and will be doing a couple of other things in the next few weeks. But for today, I think the NDSS's slogan kind of sums up this journey well. As a family that has a member with Down Syndrome, we often have to "do something extra" from typical families. Whether it's the therapy and doctor appointments that crowd our schedules, to the extra minutes we spend on feeding issues, to the extra years we spend working on physical milestones, we are just like normal families...just with a little extra. And this weekend, our "something extra" was a fun one.

When Sam turned 1 back in July, I stressed about how to celebrate around all of his feeding issues. I eventually gave in and made him a cupcake, but he didn't really get to eat it. So this weekend, in honor of Luke's half birthday and Sam's feeding therapy discharge, Travis made cupcakes and we celebrated all over again. This time, he ate the heck out of that cupcake.




(Funnily enough, Luke was really concerned with how "dirty" Sam was getting, so he got a towel out to help clean up.)

Way to go, Sam. You earned that cupcake.

We all did.