March 15, 2012

3:21 Day 15

Samuel had physical therapy this afternoon. I love our therapist. She's obviously in love with Sam and has been very encouraging as we struggle to meet milestones. Sam has always had a very strong lower body, but his upper trunk and arms have been weaker, first naturally, and then delayed even further because of his open heart surgery. At 7 months old, he is just finally getting a supported sit, or a tripod sit, on his own. He can even do anywhere from 10-30 seconds of sitting on his own. Most of the time he gently list to one side until he falls over, but sometimes he can stay sitting up pretty straight for a long time. His arms are still his weakest link, so he has a hard time propping himself up when he is on his belly.

Our oldest, Luke, was a very physical baby. He held his head up early, he pushed away from us until we learned to spin him around to face the world, he loved to stand on his legs, even before he could sit up well. He's still ahead of the game when it comes to physical milestones. Earlier this week, when we had him evaluated for his speech delay, he tested 6 months ahead in gross motor skills.
Luke at 7 months. He'd been sitting on his own for a few weeks by then.
It can be so hard to not compare our two boys to one another. It's a natural instinct that I am trying hard to ignore. I know that it's pointless to even look at the "typical" infant physical milestone charts for Samuel, especially since Luke proved that they don't mean anything. 

But you want to know something that is incredibly frustrating about even Down Syndrome Milestone Charts? Here, go take a look at this one. I'll wait. Just to take a quick peek at something simple like "Stands Alone." The average age is 18 months, but it's the range that drives me insane. It says 12 to 38 months. That's an 26 month range for when it may or may not happen. A two year difference between early standers and late standers. 

I spoke earlier about just how different each child with Down Syndrome is from even other children with DS. There is a huge range in physical abilities, especially at these young ages. While I know that this aspect of our daily life with DS will change as Sam masters all these skills in his own time...right now, it is front and center. It's literally penciled into our days as we meet with therapists, as we consciously play with him in certain ways to stimulate development, as we find ways to help him tolerate being on his belly so that he can work on his upper body strength.

Who needs to sit by themselves when you have a Bumbo?!
P.S. I don't normally let him play with knives. But everyone needs to pull their weight in the kitchen, am I right?
I know that no child is predictable. Shoot, Luke has proven that to me over and over. First with his leap frogging over physical milestones, and most recently, with his lagging speech development. Not even everything about my "typical child" is typical.

It is just so hard to not stare at those charts, wondering and hoping and dreading. A few weeks ago, one of our therapists dropped off a printed copy of the milestone chart they use. I perused it and then laid it on the counter meaning to file it away at a later time. However, without doing so purposely, I placed it on the counter that runs behind my kitchen sink. So, for weeks, as I did dishes and washed bottles, I'd find myself glancing at it. Thinking about what it must be like to have a 6 year old in diapers. What it would be like to have to a 4 year old who didn't talk. How it worked to have a 3 year old crawler.

This was not a helpful habit, as I'm sure you can imagine. I finally got smart and filed it away in the big box full of things I will deal with when I have to. One thing at a time, right? Today, all I'm going to worry about is working on sitting and loving my sweet boy. The challenges of our tomorrows do not need me to worry them into existence.

Less than a week left until World Down Syndrome Day

2 comments:

  1. Both your boys are beautiful and perfect. I understand that the development charts are useful tools, but don't get bogged down by them. I was a tiny child... I mean realllly tiny. I ate well, was active, developed skills ahead of schedule, etc., but the pediatrician pricked my finger EVERY visit, testing and testing because she was sure something was wrong with me, and I developed a fear of going to the doctor for a good long while because I equated it with that painful stick in the finger. The tests always came back normal. At a year old I was the size of a "typical" six-month-old baby...in my year-old pictures I looked like a Munchkin from Munchkinland. Years and years of pokes, prods, pricks and tests later they finally made a diagnosis. I was small. Yes, I was small. I am 51 years old and 5 feet tall. I would love to be taller but, alas, if it hasn't happened by now, it never will. Your boys are going to be fine. Look who they have for parents! They are well-fed, nurtured, taught and loved and they have excellent healthcare. Your doctors will tell you when it's time to truly be concerned. Celebrate the milestones, but make them unique to each boy. It's all going to be just fine for you and Travis are doing a beautiful job. Thank you for sharing your life and family with us. I read each of your blog posts! Those little smiling faces make ME smile! Blessings!

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  2. Hi Tori! I've been following your blog for a while now and I'm just in love with your 2 boys. Our family is similar to yours. We have Colin, 4, and Ben, 14 months. Ben has Ds. I totally relate to this post. The Ds timeframes are huge! My Colin sounds like your Luke. Colin walked at 10 months and then didn't say a word until he was 2 and a half. His development wasn't typical at all! Looking forward to getting to know you and your boys better:)

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