We've been seeing a lot of this around the apartment lately:
That's Abigail standing. It's impressive because she's not pulling up on anything to get into a standing position. She's going from sitting to standing using nothing but her own muscles. If you'll join me for a trip down memory lane, Abigail first started pulling up to stand at 14 months of age in July of 2012. 10 months ago.
I'm neither joking nor exaggerating when I tell you that I work with Abigail nearly every day (I'd say 85% of days either I or PT works with her) to help her advance. Sometimes we do formal 20-30 minute sessions where I imitate things she does in physical therapy, sometimes I do super informal things where I just creatively modify playtime to help her work on a specific muscle group. Once a month from months 1-5, then every week since she was 5 months old, she's gotten an hour of physical with a physical therapist (excusing a brief hiatus from months 12-15 when we were in Michigan, whose early intervention services are sorely lacking!). The PT gives me plenty of ideas to use with Abigail during the 6 days a week I have her alone and I combine them with tips I read on other people's blogs and things I read in books. I briefly explain on the Down Syndrome 101 page why kids with Ds are physical delayed: "People with Ds have low muscle tone. This just means that the person’s muscles take longer to respond to stimuli than high muscle tone muscles. For example, a person with low muscle tone might have to do 15 bicep curls where someone with typical muscle tone would only have to do 5 to get the same size biceps. This is why it takes kids with Ds longer to sit up, crawl, walk, etc. They have to work a lot harder in order to reach the strength level it takes to move n' groove." Of course, there are other factors, like heart conditions that can slow growth and strength, etc, but that is a very brief, simple answer.
After 10 months of diligent work, this is how she stands up now:
So. Frickin'. Proud.
You know those times when your toddler breaks down in tears because she didn't get something she wanted and you sigh, turn around with your hands on your hips and exclaim sarcastically, "Being two must be sooo hard!" Whenever I have those moments, I always guiltily cut myself off mid-sentence.
For Abigail, it is really damn hard. It's like we're all standing at the starting line to the race that is life and each of us has a path to follow. Of course we each have our own different obstacles, maybe some prickly bushes, a sand trap, a water hazard, that we have to tackle, but Abigail...her path sounds impossible. She has to run up rocky mountains and swim across ranging rivers with dangerous currents. She has to battle torrential down pours and winds so strong they knock her down. Her path curves left and right, switch-backing down steep hills. It's twice as long as my path and she has to take each step in discount-bin canvas shoes while I lace up brand new Nikes. Just to get to the same finish line.
60 years ago, parents who gave birth to a child with Down syndrome were told their children would never walk. Likely never talk. Probably not even live, as the average age was 10 for our grandparent's generation. A majority of such children were packed up and sent away to institutions.
But not today.
Our two biggest goals right now are to get Abigail standing for longer stretches of time and taking more steps without falling or needing to grab onto something. Her biggest obstacles include core weakness (which we strengthen through exercises) and ankle weakness (which we strengthen through orthotics). We'll need to work on turning while standing, running, jumping, and all sorts of things I didn't know took so much effort, I'm sure.
After two years spent in the high-needs phases, I'm looking forward to the day I can unstrap her from her car seat and let her walk herself to the front door so I can grab a load of groceries. Or the day she can walk while holding my hand or at least a purse strap so I can use both hands to fumble with a package at the post office. I'm looking forward to experiencing the day I can stand in the front yard and yell "Get back here right now, young lady!" instead of nursing two sore muscles, torn from carrying my daughter everywhere for the two years. In the meantime, we stumble, we stand, and we take three toddling little steps with wobbly knees and death-grip toes.