As I explain to friends and family my perspective about what happened with Gracie’s school, I am picking apart all my actions, wondering if I did the best thing or the right thing or the wrong thing. And so, as an exercise, I am going to try to figure out how this would have gone down with a typical kid at a typical school.

It’s actually impossible to begin, since this whole thing began with a bone infection that was beyond anyone’s control. And I never would have undergone the arduous task of collecting medical reports to try to explain my unique child’s extremely rare medical condition. And really, it wouldn’t be a special needs school anyway – maybe a private school, though. So say she was a student at a private school, and she got sick, and the school called me to say “Gee, we didn’t realize she was going to be getting sick. We can’t handle that kind of medical condition here – you will have to go to a public school where they will be forced to accommodate her.” See, even with my exercise, it’s impossible to change the facts enough to apply to a typical kid. So this is definitely something unique to special needs parenting.

I left out an important part. The school believes it is liable for getting your child sick. They want you to sign a waiver of liability, which you say is unnecessary because you’ll never sue them. You toss in “and besides, those things don’t stand up when there’s actual negligence” just to be snarky; probably shouldn’t have said that. The preschool director is clearly shocked, but you don’t really care – your only dealing so far with this woman is this one where she makes it clear that her son has severe needs that are nothing like your child’s but doesn’t manage to get across that she gives one flying fuck about anyone or anything except herself. You are shocked that they think they are liable for her bone infection (let’s ditch the exercise for a second) since it was not preventable. You try to assure this awful woman that you would never, ever, EVER sue the school, but she doesn’t want to listen. She only wants to tell you what she wants to say and doesn’t care what you have to say. It’s clear that her heart is three sizes too small.

So the preschool director, that awful lady, calls and says, “your kid can’t come back to school unless we have a meeting with her doctor to clarify her medical needs.” Actually, she says a lot of things, and they’re all terrible. But you want your kid to go to school there, so you set up the meeting. And you have the meeting. And it becomes clear in the meeting that the school doesn’t want your child there – that they feel she is a liability and they worry that something else will happen and you will sue them, even though you assure them repeatedly that you would never, ever, EVER do that. And that there is no legal basis for you to bring any suit anyway. The teachers and school officials repeatedly say that they “want her in class, BUT…” – those words were spoken repeatedly in that meeting. As customer service pros advise, never use the word BUT, because no one listens to what was said before the BUT – they only hear what came after. And, it’s true. “I want her in my class, BUT…” – that says to me “I don’t want her in my class.” BUT, I digress.

Anyway. There’s a terrible meeting, in which it becomes clear that your kid is not welcome at the school you thought she was thriving at. You leave the meeting heartbroken, feeling terrible that this school you thought so highly of thinks such terrible things about your child. But then, after the meeting, you get an email that says, “Your kid can come back, BUT…” After that BUT, it said “we don’t recommend it and here’s why” followed by a bulleted list of reasons why she shouldn’t go to school there. You want nothing more than to give the school a big fat finger at this point. Here is where I made another mistake – I sent her back. I should have realized that it was over. I DID realize it was over, but I was thinking that if we sent her back, maybe she would have a chance to say goodbye, to separate from the school in a better, more productive, less painful way. I was wrong; I should have collected her belongings right then and there and never looked back. This was one of my mistakes in the process.

BUT, to continue. You send your kid back to school anyway, and it’s weird and awkward. You are uncomfortable there, knowing how everyone feels about your child. They are uncomfortable, treating your kid like some monster, or a china doll maybe – a bull in a china doll suit? – and it’s just weird all around. After three days at this school, you get a call to come get your kid because “she isn’t listening and it’s been 10 minutes.” You know they aren’t calling anyone else to get their kids for not listening – in fact, you’ve seen staff members walking the hallways with kids for the duration of preschool because the kid won’t listen – but you are summoned because the school wants to villify your innocent child.

While you are on your way to pick up your kid, you call your husband, who is equally deflated. He says, “I knew this was gonna happen. They are just going to call us for every little thing now.” You are crying. You hang up, but then call back and ask if now’s the time to pull her out of school. Your husband agrees. For the rest of the drive, you mentally compose your letter of withdrawal to the school. Your heart is broken and you feel guilty for ever sending your child back to the school.

When you get to school, the front desk person says the preschool director wants to talk to you, but you refuse. You quickly move through the school, gathering all her belongings. You see your sweet child. She is gutted – crying, angry, sad, miserable that it’s come to this. She knows she’ll never go back to the school. She grabs you and doesn’t let go as you go around collecting her stuff. You listen to the teacher’s reasoning for calling you, which does sound like bad behavior but doesn’t sound like anything earth-shattering. Certainly not anything she hasn’t done before, and not as bad as some of the things she’s done. And, it sounds like typical 4-year-old behavior – or maybe not, because she’s so smart that it’s more advanced than a typical 4-year-old. The teacher offers to give her another chance the next time at school. You ask your daughter, “What do you think? Will there be another chance?” And she grabs you tightly and shakes her head no.

As soon as she’s buckled in the car seat, you can see the relief flood her little body. A new wave of guilt washes over you as you realize that she’s been stressed about going back to her school – it was just as hard for her to be there as it was for you to leave her there. You drive her home and talk about her behavior. After all, she did misbehave. She should understand that what she did was wrong and she shouldn’t act that way. At home, you write the email you’ve been composing to the school’s executive director. You make sure to include the word “discrimination” – they did not force any other child out of the school, even though she is not even close to the most involved kid there. You also make sure to let the ED know that you won’t be supporting the school financially anymore, and neither will your co-workers. You feel a little pang of conscience – or whatever that is when you get butterflies in your stomach, maybe a little premonition that you are doing something life-changing. But you hit Send.

Does this sound terrible? Does it sound like an angry, spur-of-the-moment response? Or does it sound like what anyone would do after going through what we have? I am struggling to do the right thing. I want to be a good person. I want to be a good parent. I don’t want to hurt anyone or anything. Maybe that’s what the butterflies were for – maybe it’s because my conscience knew that email would hurt its reader. The words were calculated to have an effect, but that effect wasn’t really meant to be harm – it was meant to be shame-on-you-ness. There’s probably a word for that.

The thing that hurts my heart the most is knowing that she was stressed out to be there. I would never have sent her back if I’d realized it was having that effect on her. Poor thing – it’s no wonder she was misbehaving. She knew that if her behavior wasn’t perfect she would be sent home, so she misbehaved. She was trying to get sent home. My heart breaks for her.

Anyway. I totally failed at my exercise – it’s impossible to imagine this happening with a typical kid, because everything that happened was a direct result of her unique and hard-to-manage medical condition. I think it’s pretty much the definition of discrimination to exclude her because of an inability to manage her medical needs, but maybe I’m wrong there. Maybe it’s just another hurdle in this special needs life. And probably one that we’ll encounter over and over again. It’s just really terrible to hear that your kid’s needs are too much to handle at a school for special needs kids.

This blog is the only public forum where I’m telling the true events. I do not want to bad-mouth this school that we loved; it still does good things for “regular” blind kids that aren’t so ridiculously smart or don’t lack feeling in their hands. Even though I think the school’s actions were reprehensible, I cannot wish them harm. But my heart is broken… It should never have gone down like this.

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2 Responses to Exercise

  1. Don’t we all question ourselves as parents and all of the decisions we make hoping they are the right ones. The bottom line is that is that you love your Gracie and would do anything for her. The school clearly broke the law by not accommodating her needs and you reacted like any loving parent would. Keep on keeping on …that is what we special moms of special kiddos do. You are a very strong advocate for your child- that is very clear. I will continue following you on your very special journey. Thank you for sharing it with all of us.

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