This time of year it is easy to find online lists like Gifts for Children with CVI or Sensory Gifts Your Child Will Love. In reality, these lists are hit or miss. Some sensory kids will like them, others will not. Just like all children, our kids with CVI are individuals, with their own preferences. Often their preferences make no sense with regard to CVI: the gift that makes too much noise, the gift with too many colors, the gift that’s too flashy. This year the holiday isn’t so much about what to put under the tree for my son with CVI, but what to put in his stocking? Continue reading “All I want for Xmas”
With the return to in person school following a year of remote learning, the birthday party invitation came early. The real and true measure of any and all social skills goals in the IEP should be, “By June, having received all appropriate supports in place all year long, the student with CVI will be invited to X number of birthday parties.” Believe me, there is nothing so gut wrenching as attempting to explain to your child why he was not invited to the party. Here we are in November, at the first birthday party invite, for my son with CVI.
Scanning the Evite the day before the party, my focus was Who’s Coming: 23 Yeses. Twenty three. Thirteen grown ups, ten kids. Thirteen grown ups attending, not simply dropping off and departing the party array. Ten kids, ten boys, easily beyond my son’s threshold. Ten kids talking or shouting and moving and runnning and playing and shoving and hitting. On behalf of my son, my own anxiety grows. In the time of the coronaviress, the party is outside, at a city park a few neighborhoods over. Ten kids to meet, ten kids to learn the names of, ten kids to play with, ten kids to keep track of, outside, in an unfamiliar place from ages ago.
It has been the longest time since the last birthday party. The last birthday party before COVID was many months before the pandemic swept in and changed all our lives.
Prepping isn’t simply clicking the Evite, adding the date in my phone – or preferably, on the paper wall calendar – picking up a gift, and engaging in friendly if stilted chatter with parents of typical kids for a few short hours. Prepping is more than you know.
The proximity of certain grown ups is regulating for children, and in my son’s world, I am It. Knowing this, and considering the Who’s Coming array and the sprawling nature of the outdoors, even a “small” park, means breaking out the full on neon chartreuse. Despite wearing completely different clothes for the rest of the day, out comes the neon, my CVI mom preferred colors, my CVI mom outfit. Knowing where I am, knowing where he can reliably find me in a certain predictable space, helps my son get his bearings, feel grounded, at the outdoor park.
Prepping for us means reminding my son what birthday parties are like. Remember other kids will be there, it won’t just be you and Theo. He’ll want to play with his other friends too. A party is different from a playdate, it’s not the one on one experience that’s more comfortable, more familiar, more accessible. That mistake happened at Halloween, meeting up with Theo for (more) trick or tricking. My son did not know that another friend would be there. Meeting a new person when you were only expecting your one familiar person, is hard. Sometimes his social experiences feel like one long continuous neverending misinterpretation that you are forever trying to unfurl, where did things go wrong? Almost always, you can point to it. Every time the culprit is either his cortical visual impairment or his auditory processing. Most of the time, it is both.
Prepping also means checking in with my own anxiety and insecurity and uncertainty: I don’t love birthday parties, I’d rather do anything else. It means anticipating and plannning everything that might be, or happen, or go wrong. My son has as many birthday party details as I am able to provide. Over and over I remind him, It’s ten kids, not one kid. We talk about the other kids, we talk about the park, we talk about donuts and no presents (one of his favorite rituals, he’ll miss) and let’s hope there are no dogs and especially no off leash dogs. Let’s hope there is no barking.
We talk about the playground, “We came here when you were little,” back when we tried to find the fun in between medical appointments, hospital visits, evaluations, therapy sessions. And no, we didn’t have time to visit the playground, to preteach, to prelearn. What am I forgetting, what am I missing? Things go wrong when I miss things, when I do not anticipate, when I peer into the future and miss a detail. It is the ongoing planning, predicting, anticipating everything for my son that is so hard in all of this. It is exhausting in the time of the coronaviress, with so little left in the tank.
At the birthday party. Arriving early. Pointing out his friend and describing his clothes (psst, salient features). His friend is the kid who doesn’t stop moving. As soon as my son manages to see him, he’s off and disappeared among other kids, playground, trees, the abyss. From my perch, my neon glow emanating – perhaps it deters the other parents? – I watch as my son finds, then loses track of his friend, again and again and again until the end of the party. Each time my son turns, orienting to my neon glow, Theo is over by the trees to your left. Theo is carrying an orange noodle. Theo is wearing a white mask. Damn Theo’s choice of navy blue t-shirt. We should have bought the birthday boy a hi-viz vest so my son would stand half a chance of keeping up with him.
Prepping also means letting my son know, it’s Ok to leave early.
Sure enough, shortly after chocolate donuts, he asks, Can we go soon? Going places and staying for any length of time has been increasingly challenging for my very social son during COVID, when most public outings are kept strategically short. Anticipating an eventual return to some kind of normalcy, we work on staying places longer. I’m talking to the birthday boy’s mom when he asks, Let’s do 5 or 10 more minutes, then we’ll go, Ok? This is comfortable for him and he rejoins the noodle play to find his friend and say goodbye.
At the base of the field is an assortment of balls, as a parent brings over what looks like a portable soccer net. Sigh. Throwing, catching, kicking, running among all the other kids.
But for us, it’s time to go.
Along the way of raising a child with a disability, there are moments when life seems to somehow come full circle. That’s what happened one day while reading a favorite book to my son with CVI. Continue reading ““Dandelion””
“Everything is cancelled.”
All of his questions have the same response. I don’t know – everything is cancelled. We can’t do that right now – everything is cancelled. We can’t go there right now – everything is cancelled. When you have a sensory kid with CVI who exists on certainty and routine and predictability and structure, providing normalcy and certainty right now feels impossible. In this time of coronavirus, his CVI, his sensory experience, his worries, are not cancelled. Continue reading ““Coronaviress””
When it is both CVI Literacy awareness month and the time of the coronavirus, you know it is going to be a brief post. What follows is a description of one approach to early literacy and books that began with the use of familiar objects (because of the CVI characteristic, novelty) as suggested by Christine Roman-Lantzy, PhD.
Continue reading “CVI first books”