My husband and I termed THOSE days, and any parent of a child with disabilities knows what I'm talkin 'bout. In our house we call them - Down Syndrome Days. For the rest of you, it's those (thankfully rare) days, or moments in a day, when I lose my positive outlook for Ellie's future, and all seems bleak and hopeless. There is no rhyme or reason to why those days/moments happen. All sorts of things have triggered them. And what causes the feeling to go away is the same thing that I use to get through every teaching moment with Ellie - patience, love and time.
It's odd that I should be having a DSD(Down Syndrome Day) moment today, or right now. Earlier today when Ellie slowly climbed down the bus steps with only a little help from mom. I can't say she hopped off the bus. Someday, yes. But certainly, not yet, even in a figurative sort of way - just ask the folks who wait very patiently in their cars.
Anyways, after she got off the bus, we played ball in the front yard for a bit. I am trying to get her to be more active, as she has put on some weight this year around her middle. As we were playing catch I "caught a glimpse" of our past when she was about a year old and receiving physical therapy in our home. Our PT at the time was wonderful, and also the parent of an adult son with DS. So she was more than just a PT. She was a mentor, and a tremendous support in those early days. She helped me to develop an ability to see the future for Ellie.
One of our sessions she had Ellie in a supported standing position (long before Ellie was standing and walking on her own) and attempting to catch and play ball. Ellie was trying to grasp the idea, let alone the ball, and got very frustrated and tired out quickly (insert crying, screaming here) so we changed activities quickly. But, I got an idea that some day, Ellie would be standing on her own two feet and playing catch successfully with other people. At the time, I REALLY had a hard time invisioning that. Ellie seemed to be so slow to pick up the gross motor skills, and fine motor skills I thought, "yea, right. That's years away. If ever." I had a lot of DSD's back then. But today, I saw her. And it wasn't that many years later (2 1/2 really). She's actually been able to play ball for a while now. But today she seemed especially accomplished at it. She does still need to be prompted to catch (the motor planning is a little slow for her, but not by much) and you need to throw an easy ball to her. Once she has the ball, her throwing ability is really awesome. She loves to look at you, and throw it in a different direction. And then, while she races you to the ball, she just gigggles, and giggles and giggles!
The memory of that moment has lifted the DSD. Her giggles are miraculous. So is her smile. It's infectious. Like I said, patience, love and time lift the DSD's away. Especially the love :)