Please bear with me folks.
I just need to get this off of my chest.
Not only for my sake, but for parents/grandparents/caregivers to realize that certain actions, verbiage and projections by others (even if they are so-called professionals) are simply unacceptable. Period.
Last week Lola had her evaluation by the public school system. This evaluation was for therapists, teachers and other special education professionals to be able to determine what services/goals are appropriate for Lola as she enters preschool when she turns three years old. Now this evaluation took place on a Thursday, Lola was just getting over being incredibly sick so I knew the evaluation would be skewed because she just wasn’t feeling well. Unfortunately, with the public school’s Winter Break coming up and Lola’s third birthday right around the corner, this evaluation just couldn’t be rescheduled. She had to go whether she felt good or not.
Now let me give you a mental picture as to how this evaluation was set up. We were in a wide open room with lots of toys and even more people. There had to have been at least eight to ten people that were jotting down notes, asking me questions, trying to get Lola to do somersaults and speak Hebrew (OK – I’m exaggerating but that’s what it felt like). These people spent all of an hour and a half at the very most with my child and somehow they became experts on what she could and couldn’t do.
I was asked to go in a separate room with a few of the professionals and they all bombarded me with questions. They then began to compare notes on if so and so saw her do this or if it was confirmed that she could do that. And this is where my blood began to boil.
I heard several of these people begin to say things like “I didn’t ding her on that skill because of her vision impairment”, “I had to ding her there,”and “She scored much lower on that than I would have expected.”
Just breathe Meredith.
I pondered over writing about this for almost a week now and every time those words flood my head, I get pissed. Not emotional, but just down right pissed.
This is a child who has NO choice on if she is able to perform certain skills. She can’t help that she is delayed. She doesn’t get to study or practice or read a fucking book on how to navigate through her life. She is doing the best she can with the tools she was given. So don’t talk about her like she is (as my husband put it) trying out for gymnastics. You don’t get to ding her because her so-called performance was bad. She is a child. This is her life. This is the only life she knows. Do you have any idea as to how difficult that life has been for her? Did you know that when she was just four months old, when she was supposed to be thriving and blossoming, that nasty seizures began to take over her innocent brain? Did you know that she has taken medication every single day since then? Did you know that there hasn’t been a week that has gone by where she isn’t working her tiny ass off in therapies so she can play catch up to your imaginary aptitude skills test? And you thought she would have done better? Who are you anyway? You know NOTHING about my child. You should have NO expectations because you had NEVER met her before. What if Lola was old enough to understand their words? I never want her to feel bad about who she is and what she can and can’t do. I want her to go through life thinking she can accomplish anything. Even if the goal is unattainable for her, I’m going to support her as she attempts to do it. All kids deserve a shot at doing anything their hearts desire regardless of a physical or mental disability. And using words that belittle them, to me, is simply unacceptable.
Now listen, I get it. I understand the schools have to evaluate kids with standardized testing because really there is no other way to get the proper services that child needs. Believe me, this is not about the testing (although one hour doesn’t really sum up a child’s abilities if you ask me). This is simply about the choice of wording and the insensitivity to the fact that she is still just a little girl…delayed or not. And to be quite honest, this is also about having respect for me as her mother. Now I’m not being overly sensitive because I’m the mother of a special needs mom (or because I’m pregnant for that matter). This is simply because she is my daughter…special needs or not. Yet I do realize that I will fight many fights simply because she is indeed differently-abled. I know this is the beginning of a long, drawn out process. One I will have to relive every single year she is re-evaluated for her IEP (individualized education plan). I know my skin will grow thicker, but I tell you I will not keep quiet when I feel my daughter is being offended by thoughtless words. And if they don’t realize their words are offensive then you better believe I will be the first to speak up. I hope this post inspires you to do the same.