Thursday, September 20, 2012

Neither Here Nor There

Jasper is a special needs kid whose needs are not immediately obvious. Not in such a way that people avoid eye contact with us when I walk him down the street in his stroller. On the contrary, Jasper is the recipient of generous compliments. These days he will often even look at an admirer's face. Jasper’s specialness is more subtle, but ever present, especially to his mother. He is special enough that, in the company of his typically developing peers, I become keenly aware of his differences, his delays, his disability.

Gross motor skills are Jasper’s strength. It is the one area where he is on track. While no record setter, his gross motor milestones are within normal range. He crawled and pulled to stand, simultaneously, at 10 1/2 months old. He started walking at just over fifteen months. People - friends - see Jasper crawling, walking, even running, exploring the world and think, He’s doing great! Put Jasper side by side with a child who cannot crawl, walk, talk, and Jasper appears typical. Then put Jasper next to a typical one and a half year old, who not only walks and talks but points at a bird flying by, or runs after a dog at the park, who asks questions, who goes and gets his shoes when asked, who can sit and play for a stretch of time. Or figure out how to retrieve a Cheerio when dropped into an open plastic container. And there is the difference. Jasper's challenges become more apparent.

Jasper’s world is smaller than that of his typical peers. Other kids react to various kinds of stimulus around them, it is constant, it is how children learn. Jasper’s world - whether because of his vision or because of his stroke - is smaller, it extends a few feet beyond him. He does not see the birds, the dog at the park, or they simply do not register in his brain. Jasper happily runs through the grass, looking like any other kid, except that he literally runs with abandon - without a visual target as his destination. (And so we practice running with purpose with me, arms outstretched, as his visual target.) His world is as big as what he can visually make sense of. In his stroller, he becomes preoccupied with chewing on the straps. Or as his new, additional occupational therapist puts it, “he is doing math,” by folding the strap in various ways, halving its length. His mom is at the center of this world. Beyond that are his toys, his home, school, and the few people we see on a really regular basis. Trees, houses, dogs standing right in front of him, birds, animals at the zoo, mountains are not yet part of his world. Flowers within arms reach are part of his world.

He does not wave bye-bye. We practice at every opportunity but the ritual gesture has not sunk in. I worried in advance about this particular milestone, which might reveal something about his vision that I did not want to know. His vision seems good enough to see the hand waving, especially the slow rate at which we practice. Am I way, way off in my estimation of his vision? Or, cognitively, does he really not get it? And which is worse?

Jasper laughs a lot - more than any kid I have seen - people comment on his hearty, belly laugh all the time. "What a happy guy!" “He’s always laughing!” “Is he always so happy??” (The answer is yes, he is pretty much always happy.) I still cannot tell if Jasper laughs because of his stroke... or in spite of it.

Where does Jasper fit? Where do we both fit? I have few friends who have typical kids Jasper’s age. This is somewhat deliberate. Especially at the beginning, it was painful to see typical babies his age, to see what he should be doing, if only so much as focusing his gaze on someone. As mild as Jasper’s issues may appear to some, he is part of the special needs spectrum. We do not go to school twice a week, or run to multiple therapy and medical appointments for fun, or because we have nothing better to do with our time. I should not have to explain Jasper’s issues, make a case for him, to a fellow special needs mom who does not get his delays, his challenges - our challenges. She simply sees him running, and thinks, Oh, he’s fine....

Monday, September 10, 2012

Seven Minutes

In the end, it took seven minutes to find Jasper an iPad. I’d spent the last few months researching and applying for iPad grants from a handful of different philanthropic organizations but got nowhere. A friend from my moms writing group put the word out to her husband’s software company here in Seattle. They commonly use iPads for testing, and replace them as new versions become available. Seven minutes after the email message was sent, our guy offered up his 3rd generation, a distinction that is somewhat lost on me, but which I appreciate nonetheless. Not only kind in his gesture, but generous, parting with the newest model rather than an older one, for Jasper’s sake. In addition, two ladies contributed iTunes gift cards to help ease the app burden.

My quest for Jasper’s iPad was not frivolous. For many special needs kids, iPads can be helpful learning and communication tools. Our vision educator first introduced one to Jasper last winter. In Jasper's case, there are stroke apps, and apps for cortical visual impairment or CVI, Jasper’s brand of visual impairment. While careful not to put too much faith in technology, my hope is the iPad will be a tool that helps hold Jasper’s visual attention - a challenge his teachers struggle with - and improve his cognitive skills.

Whoever you all are, Jasper and I send you our deepest gratitude... thank you, thank you, thank you.

Last but not least, thank you, Hollie, for making this happen.