age 6 T-Ball
One of the most intriguing aspects of parenting a child with a significant disability is the decisions you must make, over and over again, year after year. You gauge all of the information at hand, look at motivations (is this for you or for your child?) and make a plan that will allow your child to have or be or do whatever it is that they and you would like for them to have or be or do. For my child, who has Down syndrome, that decision is primarily made twice a year in relation to schooling, and 4-5 times a year in relation to sports.
Ciarra LOVES sports. Just like her big brother, she is a competitor. She loves the games, she loves the crowds, the dirt, the contact, the noise. But mostly, she loves to compete. She wants to win, and she wants to be a part of the winning, and not just be a spectator.
In many ways, the frustrations of striving for true inclusion in her schooling can be depressing and disheartening. Currently, we are battling the school (perhaps all the way to court, it seems) to include her more. She does not like to go to Special Ed when it means missing out on fun and exciting classroom time. And she knows the difference. We are asking the school to bring in an Inclusion Specialist to help find the ways that she can be included more, to make scheduling work better for her. But it is an emotionally charged and frustrating time, when PET time rolls around each Spring and decisions and placements are made for the next year. 
It's a good thing that Baseball season comes on the heels of the PETs, because for now it is the saving grace in her world. In baseball, Ciarra is standing on an even playing field with her typical peers. She is not the strongest, nor the weakest. She is not the fastest...ok, she is the slowest. And sometimes she needs reminders as to where the play is, which base to throw to. But her heart is in the game, and she lives and breathes it for every single second of the season. Still, the decision to let her play or not is a hard one. Lots of things to consider. We help make the decision easier by finding a coach who is willing to work with us. This year, her coach and his assistants are wonderful. They remind her, encourage her, and prompt her when necessary. But mostly, they treat her with respect, they honor what she can do, and they do not assume that she can't. In her head coach's words from Friday night: "Teach them to respect you, Ciarra." She did, and she does.
I only wish that she didn't have to reteach this every season, in every sport she plays. It seems every season is a test, can Ciarra do it? Can she keep up? Is this the best choice? These are very real questions, and they require honest answers. Answers not skewed with Mom's opinion, but objective and realistic judgements on her ability to play the game, do it safely, and do it in a way that does not detract from the experiences of the other children on her team. 
It means knowing that a certain fraction of parents will wonder what the heck we are doing out there, and it means facing some prejudices head on. It means asking the good folks who run the local rec program what they think; inevitably their answer is, "If she wants to play, let her play." They do seem to understand the intensity of my questions. I think sometimes I ask so many because I want to give them an opportunity to say no if they really think it won't work. To their great credit, they never have. Instead, they take notes about concerns, and they try to help me make the decisions about placement, coaches, and safety. They discuss honestly with me each year, each sport, each season...what can we do to allow her to play the games she loves so much?
This year, it meant allowing an 8 year old to move up to regular baseball, from T-Ball. 3 years of T-Ball have taught her the basics, and given her a thirst for real pitches and meaningful scores. The team she is on is made up of 6-7-8 year olds from 1st and 2nd grade. Ciarra is a 2nd grader, size wise and ability wise, she fits in fairly well. It was interesting to note that she has more of an attention span than some on her team, mostly boys, and somewhat younger than she. But she is decidedly a member of the team. She takes great pride in putting on her white baseball pants and her new cleats. Pink glove, hat, even tiny batting gloves. She certainly looks the part. One concession we made was purchasing a smaller (pink, of course!) batting helmet, the rec ones are huge on her and she really needs to see where she is running to. 
Of course, there are plenty of very capable kids on her team, and on other teams. They can really throw the ball, for instance, much farther and harder than she can. Some of them hit farther than she does, too. But hitting the ball is not a problem for Ciarra, either. She clocks it, actually. I think it was quite a surprise for the little guys crowding the plate expecting a 3 foot roll if she got lucky enough to hit it at all. It was one of those great moments of parenting a disabled child to see her look of pride, their look of surprise, and the newfound respect they showed for her when the next inning came up and they positioned themselves farther back in the outfield. As always, it is Ciarra doing the teaching in this topsy turvy world of Down syndrome and society, she leads the way and I just follow along whispering crazily to myself "I told ya so!" So many times, she has proven herself capable to a less than open-minded crowd. Be it reading, or scoring a goal in soccer, or tying her shoes so early on, Ciarra proves often that there are at least as many things she is GOOD at as there are things she struggles with. In her world, "I can't do it" is not in the vocabulary. I am learning not to let it be in mine, either.
No doubt, she is growing older in a society whose expectations are ever more demanding. It may someday not be enough that Ciarra is really good at hitting the ball, if she cannot run fast enough she will be seen as a detriment. Just as we struggled this year with her wanting to play and all of our doubts about ability and attitudes, we will make and remake this decision over and over again in the years to come. Someday, it may be the most appropriate thing to tell her that she cannot play. Someday her safety may be at risk and the decision will be easier. I have allowed myself to consider what it will be like when that day comes, but I am jerked back to reality by Ciarra herself, tugging on my sleeve, holding up her little pink glove, and imploring me to go outside and "Practice baseball!" 
If I would have known, when she was born, how much of a fighter she would be, it would have eased so many of my worries and concerns. I needn't have worried. She is far more capable and has far more heart than I could have ever imagined. The goodness of most of the people around her makes it possible, for now; coaches who see her as just another kid, parents who see her as an individual and not a token representative for Down syndrome, and a society that is slowly but surely knocking down the doors of exclusion. For now, the world is right, and Ciarra has the opportunity to make her own mark on her world, in something she loves, and be judged on her ability, and not her disability. Good luck, baby girl.
Dad’s Truck & Camper
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