For those just tuning in, Sloane, our beautiful daughter, has classic severe non-verbal autism. I have stated this before in my past blogs, but we live in Sloane’s present, in her and our “now”. Mentally this is a survival skill for us. To go too far into her future is scary. Especially when the “now” has been a little difficult lately. We have to live in her 8 year old “now”, not a typical 8 year old’s “now”. That can be even harder sometimes.
Sloane’s summer has not been filled with playdates, sleep overs and pedicures. And the place where I cannot let my mind and heart go is that it is possible she will never have those pre-teen/adolescent rites of passage. In her “now”, those things may never happen. But I don’t let myself focus on those things. The random glimpses of these things that pop into my head, that I quickly shew away are too painful to let myself linger on. I cannot control the glimpses, but I can control how much I focus on them.
Her last day of school this past year, I was pulling past the playground to go pick her up. The playground was filled with kiddos in her age group. At the same school she attends, on the same playground she plays on, there are kids she will probably never be BFF’s with. Little girls were standing in the corner of the playground laughing and playing, and for a split second my mind went outside of our “now”. My mind, without hesitation, placed her in the middle of those little girls; planning their summer, deciding whose house they get to have a sleepover at first, going to the Community Center pool…. “STOP SHELLEY,” I said to myself out loud, and I quickly brought myself and my mind back to its safe place and went on with OUR day! I could daydream about those things for her all day, but that does not do her, or myself, any good.
And her summer has been kind of yucky. The battles that she is fighting right now are not easy to navigate or to problem solve. From hormones, to communication, to bowel issues, her list of pain and frustration seems to be at a high. Her “now” is hard at the moment. And as a parent, I want to fix it. And I want to fix it without having to put her through any more pain. But her lack of knowing cause and effect make these trials hard to execute. I want to have a conversation with her as to why she has to take this medication, or have this procedure and although it might cause pain at first, it will help later. And I do explain this, although this is something I do not think she always understands. She just remembers the “uncomfortableness” of it all. And then her being unable to verbally tell us her feelings — well that is just heartbreaking to me. But we have to push through these parts of her “now”, do what we can to “fix” these parts and try to find the happy in her “now”.
As hard as it may be for some to see, Sloane has a lot of happy moments, too! Her “now” is full of them. You put Sloane in a pool, even if it is a blow up pool in the back yard, and she is a care free little girl! Give her a tub of stuffed animals to lay in and throw around or a new music toy to put to her ear and her smile can light up a room. Her joys are simple but that smile of hers can make the most complex worries and those stupid glimpses of mine fade away into the void of unknown. That smile of hers can ease a worried heart!
For all moms, but especially special needs moms, a worried heart is not hard to come by. And these moments and lapses of keeping my guard up to block the glimpses of what could have been, can take a toll. So many special needs parents know this. And what each of us have to do to bring ourselves back to our “now” to keep our sanity in check, is different but so necessary.
Regardless of all this, I have hope that, God willing, one day Sloane will experience some of those glimpses that just live in the far corner of my head locked tight. While we might not let our minds dwell too much on them, don’t be mistaken, we absolutely hold on to the hope for them! We set her goals for health and knowledge to be small and obtainable. Baby steps, as many autism families know, is the way to go. We find the happiness in our “now”. We make her “now” as joyful as we can. We focus on how our little party of 4 is blessed in SO MANY ways. Even if our focus some days has to be a little forced, there’s no denying our blessings. Our strategy? No comparing, no focusing on glimpses, just our blessings, our “just fine” moments, our happy place…our “NOW”!
Lots of Love,