Then I will just love you.

It was late, and I was tired of being woken up from those early, dead stages of sleep, but regardless – when the meltdown went full swing – I stayed. For 45 minutes she cried mad, hard tears of rage, and nothing was EVER going to be okay again. I had turned off her new favorite show (Fuller House) because I realized it was keeping her awake instead of helping her go to sleep. (Yes, Emma 100% needs to have a cartoon playing to go to sleep.) Anyway, the abrupt changing of the channel totally set her off. In her defense, I was at least half asleep, and I didn’t even tell her what I was doing. I just came in, got the remote, and changed the show.

In Emma’s meltdown-world, she was never, ever, ever going to see the show again. Despite my promise that she could watch it when she got home from school tomorrow – it was still NEVER GOING TO HAPPEN. Logic was not happening, and the passage of time wasn’t making sense. These are things that I understand now… pre-frontal cortex shut-down. So, I laid down and just kept telling her how much I loved her, and that I wasn’t going to leave until she was alright. Eventually she came back to our version of Earth and things were going to be okay. We started talking a little, snuggled up in the blankets, looking at each other’s faces. Her eyes red from crying, we had this conversation:

e: Mom, am I ever going to make this life?

m: What do you mean?

e: I mean, is this life going to work for me? Am I going to be able to have babies? Have a boyfriend? What if I can’t do them… what if I just cant, and I just fail, and I never get control of myself, and I just cant…. do… or be anything real. Mom, what is going to happen to me?

m: Well. Then I will just love you. And I will still take care of you, Emma.

e: Momma, you have the most beautiful hair in the world.

m: Thanks Emma, you have very pretty hair, too.

e: And you have the most beautiful eyes.

m: Thank you.

And my eyes fill up with tears, because she was SO real at this moment, so lucid. Grief. What a sad thing for a 10 year old girl to be thinking about; those thoughts, they have a backing of truth that I just wish wasn’t there. I mean, what IS she going to do? What will life look like when I’m old, or dead?

I stroke her hair and remind her, “Emma, you just have to keep trying, really really hard, and do your best to keep growing.” Sometimes I feel like this grief that ties into my parenting Emma comes from clinging to the dream or an expectation. So, I remind myself to stop holding to the dream or expectation. Then, something in my brain says, “But how come everyone else gets to hold on to those dreams?” And I don’t have an answer to that right now. Maybe tomorrow, when not tired and sitting in in this quiet place called midnight, my positivity will kick back in.

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A Letter to Special Education Teachers:

(Originally posted in a 27,000+ member Facebook group for Special Education Teachers and Support Staff)

Dear Fellow Teacher,

This group has had numerous posts and articles with hundreds of comments on the topic of Special Education Teachers being physically abused and assaulted by students with disabilities. There are so many people in this group, and so many varied answers. However, I find myself feeling frustrated and agitated with the lack of perspective and level of judgement by some professionals in this group in regards to this subject in particular. The subject, again, being violent/physically abusive children. However, please note that it does cross over into nearly ANY single negative aspect of educating a child with a disability – when that aspect is directly attributed to their disability.

First, I want to clearly recognize that there is such a thing as a child with a disability that is responding violently, and that the violence can be unrelated to any of their disabilities. I know that does exist. But for the intent of this letter, I am going to speak to the other (much larger in special education) percentage of children, the group of children that are physically violent and it is in direct relation/due to their disability.

From the comments and reactions on posts/articles, I’m not entirely sure if some of you really truly recognize that there are children out there with disabilities that affect them in such a way that they are completely unable to control their violent and physical outbursts. My daughter is one of these children. She is loving, caring, generous, and has a heart of gold. Yet her disability prevents her from being able to exhibit the self-control and whatever else it takes to not respond physically and aggressively when she is perturbed in nearly any way.

There are many children like my daughter. These kids cannot have the violence “disciplined out of them”, ABA does not “train it out of them”, fear of law, returned violence, or even threat of death cannot allow them to simply control themselves. Again, this is their disability. That doesn’t mean they won’t have good days and bad days, that at times something clicks and they are able to handle a situation beautifully. It happens. But that also doesn’t mean they can control themselves all the time and are choosing not to, or they simply “aren’t motivated enough”.

Excerpt of my daughter at home… sobbing hysterically, “I don’t know why I get so mad!!! Why do I get so mad! I don’t want to be angry, I hate myself!” Enter self harm. Suicidal ideations. Scars on arms from scissors. Yes, she also has depression and anxiety in addition to her other conditions – but these thoughts are in direct relation to her inability to respond typically, and the violent, mean, abusive, aggressive responses or outbursts she has. Teachers, I just want to give you a little view of home life. She knows right from wrong, she LOVES people. Her inability to control herself has led to a self-image that is very, very difficult to live with.

Just like a child that is perhaps cognitively impaired and unable to show control of their bladder, requiring diapers and stinky, unpleasant diaper changes throughout the day, these children have special needs that go above and beyond the care of a typical child. It’s so unfortunate that their dysfunction is painful and actually dangerous at times.

When you sign up to be a special education teacher, you are signing up to help teach all children with all disabilities, and this includes children that have conditions like my daughter. They are protected by law, which clearly states that they deserve a free and appropriate public education, just like everyone else. If you are unable to handle the physical nature of a child that has an emotional disability, I understand. It really takes a special kind of a person to be able to effectively handle and deal with that. But you need to recognize that the child has a disability – and that they deserve everything the sweet, quiet child with Cognitive Impairment has, or the funny, quirky, at times agitating child with autism or ADHD gets.

You can make the choice to work in a classroom, school, or a district where you are not going to be caring for the hardest of the hard kiddos – but again, when you run into those children that I’m speaking of, instead of belittling parents or the children themselves(!), consider the fact that you did indeed sign up for this, and that if there is an issue, it is with your level of training and education as a professional or how your school district is organizing its special education students. I’m not saying it’s a teacher issue — I’m saying it’s an educational issue or it’s a structural issue, not a student or family issue.  

I’m sorry that my daughter has hurt other people, it sucks so bad. A para I care greatly about had to have surgery on her shoulder due to an incident with my daughter that consequently led to a legal battle with insurance and her losing her home. It’s so hard not to feel guilty. I take that back, it’s impossible not to feel guilty. I just reign it in. The para hugs me, and says, “I knew exactly where I was working and what I was doing. I chose this job. It’s not her or your fault.” Ugh. But again, welcome to the world of disability. It isn’t a pretty thing. It hurts emotionally, and physically. Perhaps financially. I suppose someday they might have special education degrees that say a person is certified to teach the blind only, or autism only, or cognitive impairment only. But right now, it’s to teach children with disabilities. Period.

I’m rather tired of defending my parenting, my doctors, my decisions, and my daughter from society in general. It’s been a nearly 11-year battle of explaining, “No, really, she’s not a horrible brat. She has an invisible disability, and it makes life harder for her than for us, trust me.” It’s hard to convince people on the outside that I’m not a horrible parent. I’m also tired of my 3 years in this group, finding myself defending the fact that IT SUCKS THEY ARE VIOLENT, but hey – we parents certainly don’t pick it, they didn’t pick it, but YOU — dear teacher — you decided you wanted to dedicate your time and energy to help children with disabilities. So, yes, you did pick IT. Unfortunately it is indeed a blank check.

I find it extremely unfortunate that our higher education system doesn’t fully prepare teachers to effectively handle these students. It’s such a disservice to you and to them. I find it awful that many school districts don’t have the organizational structure to really best serve these children, and in turn, help their special education teachers out, too. It’s not fair to the teachers or the children. But regardless, there is a need for champions for these children. They deserve love, affection, attention, proper ‘care and handling’, education, and the chance to grow and stretch into the most functional people they can be.

Thanks for reading,
Daleth
Mother and Special Education Teacher

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