Medical bias. Or rather, bias in general. To be honest I was pretty unaware of it during our first months with Cyrus. I was so scared and worried and looking for answers that I really wasn’t able to fully be aware of the bias that occurred towards Cyrus due to his injury and subsequently his diagnosis. But it started early on, and by early I mean within days of his birth. The world tries to put those with disabilities into a box, and its something you don’t really realize unless you have a child with disabilities (or you are disabled yourself).
It started in the NICU. We were told not to expect Cyrus to latch or have the ability to breastfeed. But he did, and all the doctors and nurses were shocked. I remember when he was on cooling therapy, and extremely sedated on seizure medications, a neurological resident came in to assess Cyrus. I didn’t think too much of it because I had assumed this man would realize Cyrus wasnt reacting to things because, well, he was completely knocked out and probably on another planet thanks to the insanely high amount of phenobarbital that was flowing through his system. Apparently I was wrong, because this resident came back essentially saying Cyrus was practically brain dead and that we shouldn’t expect any quality of life out of him. I remember my husband and I being furious about this assessment. I remember thinking “you’re only saying that because he has some form of brain damage”. At that time we didn’t know the extent, so how could he possibly imply Cyrus’s brain hardly had any functional ability? Thankfully once Cyrus was warmed back up and his Phenobarbital was decreased the neurologist came in to do her own assessment, and commented on how promising things looked. She saw the big picture, she told us that neuroplasticity is a very real thing, and Cyrus has every chance in the world to rewire his brain and work past the damage. That doctor is still our neurologist to this day, and she has always been encouraging of Cyrus. She is a key part of our team, and someone I look forward to talking with every few months.
People, medical professionals included, are very quick to judge Cyrus based on his disability. After Cyrus was discharged from the NICU we were part of the NICU follow up clinic every few months. We would go, someone would spend maybe 10 or 15 minutes with him, and we would hear all about the things he could not (and most likely would not) do. At one appointment he had spent 10 minutes with a child psychologist who decided, after having never met him before and not allowing Cyrus enough time to warm up to her, that he was the equivalent of a newborn. She judged him in those 10 minutes and decided that Cyrus didn’t have the ability to communicate at all. Is Cyrus non-verbal? Sure. But can he tell me when he wants something, or even WHAT he wants by eye-gazing? You better believe it. But shes not the only one. We have had therapists tell us that Cyrus would never be able to walk, only then to eat their words when they saw him in his gaittrainer. We have had nurses and doctors try to force us into procedures we weren’t quite ready to accept because every child with a cerebral palsy diagnosis is thought to need a feeding tube. To clarify: Cyrus WILL be getting a g-tube, but it was after over a month of feeding therapy and a lot of discussion between my husband and I. It was OUR decision, but if it had been left up to certain medical professionals Cyrus would have never been given a chance to develop his oral motor function. We had an ophthalmologist try to force us into strabismus surgery when Cyrus was only 5 months old, even after patching was showing improvement. She never took into consideration that Cyrus had CVI, she almost shunned us when we brought up vision therapy and the possibility that his eye turn was neurological. Turns out, we were right. Vision therapy has shown major success for Cyrus, his strabismus has greatly improved, and it all is because he has neurological damage (in fact, his eye turn has been my first indication for when subclinical seizures are popping back up). But had we agreed to surgery Cyrus would have simply had a cosmetic fix, and we may not have even attempted vision therapy.
And here’s the thing, typical children aren’t faced with this bias. A typical child might go on a mini feeding strike, maybe loose a little bit of weight, and the doctor would say “let’s just monitor this, come back next week for a weight check”. Cyrus on the other hand was told he needed a gtube placed immediately. Why? Because he has a disability. Typical children are given some extra time, or told “maybe hes just shy” if they don’t use their words to communicate. But not Cyrus. Why? Because he has a cerebral palsy diagnosis (you’re seeing the pattern here, right?). Maybe Cyrus won’t ever use his words to communicate, but does that make him less valuable than someone who can? Absolutely not! If you spent one day, just one single day, with Cyrus you would quickly see how incredibly cognitively intelligent he is. One of his favorite things to do is paint. While he is finger painting I will offer him two different colors to choose from. This boy, this 18 month old boy, will look at the two colors, look down at his painting and the colors that are already there, and will look back up and eye gaze at the color he thinks will work best with what he already has on paper. I mean, hello baby Picasso, am I right?! During meal time he will look at his spoon or his cup depending on whether he wants to take a bite, or wants a sip of water.
Its exhausting as his mother to constantly have to tell people they’re wrong. Its exhausting to see the glances from complete strangers because I’m holding or wearing my toddler rather than having him walk beside me (because they just don’t know). Its exhausting to be told “you hold him too much” “he should be in a high chair” “you coddle him” when people just don’t realize that he needs specific equipment just to sit properly, and that if I let him cry too long he will go into a breath holding spell and pass out! I am constantly teetering between wanting to explain it all to people, and just walking away because I simply don’t have that kind of energy. My guard is constantly up, trying to shield Cyrus from the judgement and sideways glances.
And then there’s the opposite of the nay-sayers. Theres people who say he will be “totally fine”. I can not tell you how much that phrase irks me. Cyrus IS fine, in his own way!! I have lived with the denial of others towards his situation, I have seen the mourning of others over the child they thought Cyrus would be. I have come face to face with those who are maybe uncomfortable, or not quite sure what to say, who will tell me “he will do all the things, just in his own time”. Ive had people look me square in the eye and say “oh you will be chasing after him in no time” or “he will be talking up a storm soon enough.” Maybe. Maybe he will. But this also insinuates that if he doesn’t, if he is unable to do all of those things, then he has failed to meet expectations. Why is it that those with disabilities have to be faced with such extremes? So often I hear the polar opposites of the spectrum, but I have yet to hear anyone say “you know what? Cyrus will do whatever it is that he’s capable of and he will be absolutely amazing with his ability!”.
So which is worse? Surely I love to see Cyrus’s face when everyone around him seems shocked and excited that he’s able to do something they didn’t think he’d be able to do. I like to think he gets that slight rebellion from me, that this tiny human is saying “oh yeah? WATCH ME!”. Surely he’s not quite old enough to process all of it just yet, hes unaware that there are people who have placed him in a box simply because of his diagnosis. At the same time he’s also unaware of the insane expectations some people have on him. But when he does become aware, how do I, as his mother, protect him? How do I say “sweetheart your capabilites are good enough!”, while also saying “its OK if you can’t do this, don’t feel bad because of it!”. I don’t feel that I should have to be put in that position, rather I feel that the mindset from others towards disabilities should change. I feel as though everyone should just say “go cyrus! Youre great at all you do!” Do not diminish his hard work and all he does simply because disability makes you uncomfortable and you want to think he will be running around like every other typical child. But also, do not dimish how far he has come BECAUSE of his hard work, and how far he is able to come. Do not judge him simply because he can not talk, or walk. Do not limit him because of his diagnosis. Do not think that he doesn’t understand you, because he does.
So where is a parent to stand in all of this? We are realistic in our expectations. Would I like to think Cyrus will be up and running one day? Absolutely! Is it a possibility? I mean, anything is possible, I’m not a fortune teller. But at this point I have a pretty good idea of what the next few years will look like, and its hard for me to smile towards the people who tell me Cyrus will be running down the driveway and talking up a storm. Because there’s a decent chance that that won’t be our reality. But we are OK with that. We are OK with whatever it is that Cyrus can do or not do, and we need others to be OK with it too! As parents we need to be respected when its comes to making medical decisions, not forced into it simply because of a diagnosis (this is within reason, there are definitely times that medical intervention is imperative and emergent). We just need people to walk beside us on this journey, not infront of or behind us.
So to the parents out there who are advocating every single day for their child, I see you! I know it can be exhausting having to be optimistic while also being realistic. I know you don’t want to feel like a party-pooper when you have to say to someone “well, my child can’t do this or that” when you are met with those who are overly optimistic, or in denial. I understand you might feel alone on this journey, especially with the weight of knowing no one knows your child as much as you do, and others may limit your child because of that. But just see that you aren’t alone, and you’re doing a great job! Remember, we are our childs greatest advocate!