When you have a child who is about to turn five, and it’s the second half of the school year, the incredibly common question, the simple question, the conversational question, the ice breaker question, the easy question, the question everyone asks, heck, the normal question, is always the same. “Where are you guys going to kindergarten?”.
And every time I hear that question, that simple, common, well meaning question, it’s like nails on a chalkboard. And every time I take a slow deep breath. I take stock, assess the situation, the environment, who I’m talking to and how I’m feeling. I quickly weigh my options. Run? Deflect with humor? Be honest? Unload the emotional soup that permeates my mind and risk falling the hell apart? Or, just pull out my go to, almost robotic response of, “we aren’t sure yet”. And then like a tennis match return the serve and quickly, with great interest, start asking the other half of the conversational equation, questions, lots of questions. Deflect, avoid, deflect. It’s a game of hot potato, and I’ll be damned if I’m going to be holding this potato.
Because “we aren’t sure yet” really means “I have no f-ing idea, and I don’t mean where, I mean when, I mean how, I mean if, I mean I don’t have a clue. Oh yeah, and I mean where”. And who is we? Surely it’s not just my husband and I. It’s not G. It’s a complex web of people, therapists, teachers, advocates and attorneys. People who know her, people who don’t. People who want what’s best for her. People who want what’s best for a spreadsheet. Such a simple question. Such a complex, overwhelming, mess.
When you have a child with special needs, delays and challenges, the toddler and preschool years offer you a special protection. They let you blend in, camouflage, fade away a bit. If your child is little, as ours is, your level of protection is even greater, because they can pass as younger, and it’s easy to hide among the masses, not face the hard questions and not deal with the hard answers. Not to say you are trying to hide those challenges, but you can easily avoid discussing with them with random, well meaning strangers or acquaintances. But there comes a time, I’m learning, where you are just shoved out on the stage, under the lights, and a simple question feels like you are being interrogated by the FBI.
While I may often play it close to the vest, I pretty much always know exactly what I want, what I hope for, how I hope to steer the future. I research and plan and connect the dots down the line and beyond. I know how to stack the deck and steer direction. But I’ll be damned if for the first time in my life, I don’t even know what I want for this child of mine. I don’t know what she needs. I don’t know what’s best. I don’t know what’s worst. I don’t even know what is okay and what isn’t. I still don’t even have the answers as to the what and why of her challenges, much less how to best meet them.
I tell myself, another year. She needs another year of preschool. A year to work on those social and emotional skills, to help her sensory system regulate better, to increase her ability to focus, pay attention and sit the hell still for more than 3.21 seconds. Another year. It makes sense, half the kids of typical parents now hold them until age six for kindergarten. People are redshirting so their son can make the football team in nine years, so surely another year of basic preschool skills makes sense for my child. Yes, an extra year. That’s what she needs. That will help. Then it won’t be so hard. She’ll catch up. As another mom said, we’ll chase that delay, we’ll get it, with therapy and homework and ABA and everything we do, we’ll catch her up. She needs that year. She’s almost five, and she’s had one play date and zero birthday party invitations. She needs more time for all those things she’s missed out on, because she was sitting in a therapy office somewhere. More socializing will fix those social skills. Another year. That’s the ticket.
And that reasoning works, until people come knock on your door with the reality. A year without support services in a classroom could do more harm then good. Getting a spot in a four year old room at any decent preschool is like winning a lottery, because they are spoken for by the continuing students (and you don’t even have one in mind, much less a top choice). You’ll mess up your IEP in a big way. She could be bored. She could be a behavioral challenge at a non-special needs preschool. You can’t stay at the special needs preschool you are at, because she’s aged out. And the big one, as mentioned to me by a friend (okay, a psychologist) who I greatly respect… she may never catch up, we may never catch those delays, and that year won’t make any difference at all.
And you know that those are all true. Especially the last one. That damn last one burns like looking directly into the sun, trying to shield your eyes to protect them, but no hands, glasses or even eyelids hide something so obvious. What you can chalk up to “delays” early on, slowly can change into “disabilities”, and that’s a lot of music to face. And you start to navigate options and learn words like mainstream classroom, inclusion and support systems. One to one paraprofessionals. Resource rooms. Structured classrooms. Self contained classrooms. Paths that lead to higher education and careers, and paths that lead to “life skills”. The choices make your head spin and stomach sick. And the choices aren’t even obvious. They aren’t advertised. They aren’t displayed proudly on school websites like gifted programs. They are quiet, they are hidden, and you have to know where to look or you might miss them. You realize that this choice, can, and often does, set a life trajectory. They tell you it’s easy to change these choices, but when you talk to people in the trenches, they tell you that’s not the case, so be careful which way you go. And you think if she just wasn’t so damn bright, this might be a lot easier to digest and decide. You see the great potential in there, but even you, her parent, are at a loss how to bring that out.
You think you are wholly and completely inadequate to make such decisions. You are not equipped. You are not prepared. You don’t fucking know. And people say nice things. Well meaning things. “You will know what’s right.” “You will make the right choice.” And you think, no. I’m no more prepared/equipped/qualified than the next person, and it really just makes you feel worse, because you feel like you SHOULD freaking know. You don’t have the wisdom that everyone thinks you have, and you wonder why not. That whole “God gives special people, special kids…” blah blah. Yeah. No. Parents like myself (well, maybe just me) are no different than anyone else, we just white knuckle it, fake it till we make it (if we make it) and hope we don’t screw up too much. If extra patience, wisdom or knowledge is supposed to come with this gig, my package is MIA or was axed in state budget cuts.
Often people see the good moments. The moments outside the home, things that are new and novel that she finds fun. The moments we are silently working in overdrive to keep her happy, allowing her to do all the things, passing her an endless supply of snacks, and doing everything we can to keep the boat from rocking. It looks okay. It doesn’t look so bad. What’s so hard? The other parents, the other special needs preschool parents, ask the loaded kindergarten question, not realizing that her path is more than a 20 minute speech session once a week or a special pencil grip to help with fine motor skills, like they are dealing with. They talk about Kumon and charter schools and options that aren’t even remotely on your radar. And you realize that even among what, in theory, should be your “tribe”, your yellow brick road, full of twists, turns, forks and dead ends, is a bit different than theirs. That’s a sobering reality. A lonely one.
And then, you feel a bit jealous of those people asking you that innocent question. Not of their kid, but of their experience. Of their excitement and anticipation, of their knowing, for the most part, that they are probably making a sound choice. Of their not laying awake, night after night, month after month, waiting, wondering and praying that somehow, they’ll figure it out. Of their worrying if their kid will know their letters and numbers and be in a class with their friends, instead of worrying about your state’s current debate over the use of restraint and seclusion in schools, and the very real possibility of that mattering in your child’s education. Or worrying if the special education advocate or attorney you hire will be worth the money you are looking at spending, or if your ridiculous state will just pull the plug on special education all together.
It doesn’t help that you can barely get through the day with the child you are so worried about. That you spend your non-existent spare time reading about oppositional defiant disorder and autism, researching ways to handle ADHD or sensory overload, answers to the questions over why this is so hard, and looking for that parenting book or program or seven year old message board post that will give you the road-map. And after you spend too many hours reading late at night, you muster all your strength and patience to start another day, one that is more often than not met with defiance and tantrums and screaming, often before even making it to the breakfast table. You work hard to put the smile on your face and use your “calm” voice. And you wonder how on earth anyone is going to educate this child that you can’t even get dressed without a battle.
You look at her older sister. The one who should be her cheerleader, her protector, her best friend. The one who has always tried to be. And you see, plain as day, resentment and bitterness building up. Frustration. And it breaks your heart, but you can’t blame her. The tension in the house, the short fuses of her exhausted parents, the patience and tolerance that is repeatedly demanded of her. It’s not fair. You miss deadlines and dates and important events in her life, because her sister’s life is so all consuming. And you try and try to find ways to make it right, to make it better, but it pains you that you can’t fix this. For her, for yourself, for the child whose challenges were not of her choosing, and would no doubt like an easier path herself.
But then you think, there are families sitting next to their child as they go though chemo or a bone marrow transplant. Parents that visit their child’s grave, and face challenges and pain you can’t begin to imagine. And you tell yourself to suck it the hell up. This might be hard, but it’s not that bad, it’s nothing in the big picture, get over it. Pull the plug on the pity party, put on your big girl panties and STFU.
And so you reply.
“We aren’t sure yet”.
And it’s true. Because you aren’t sure. About any of it.