I mentioned in a previous post that something happened yesterday while at Gavin's hematology appointment. Akron Children's Hospital was great, they always are.
You have to understand something before we go any further.
This appointment took place where Gavin used to receive his IVIG infusions. We're very familiar with this place after years of visits.
Gavin is a sweet kids and doesn't have a mean bone in his body. He would never intentionally try to hurt someone or say something that caused someone pain. Unfortunately, along with missing mean bones, he's also missing a filter.
It's not uncommon for kids on the Autism spectrum to lack a verbal filter. They basically *say it how it is*, and are unburdened by things like inhibition.
Typically, kids with Autism don't lie. They just don't. They will tell you exactly what they think, in the most brutally honest way imaginable. That's not always a bad thing but there are times that it can get them in trouble because they're misunderstood.
In Gavin's case, he's very prone to blurting out whatever just popped into his head. We found that he can say the most horrifyingly inappropriate things at the absolute worst possible moment.
As Gavin has gotten older, it's become more and more problematic. He looks very much like a typical eighteen year old kid on other outside and that's very, very, very, very, very misleading.
With all that said, you hopefully have a better understanding of the context surrounding things in regards to Gavin.
If you've ever been to a pediatric outpatient infusion lab, inside a hematology and oncology clinic, you're likely aware of the many reasons for kids being there.
There are kids like Gavin, who are receiving treatment for CVID but there are also kids who are fighting for their lives against things like cancer.
I'm in no way downplaying CVID. It's absolutely a life long, life threatening condition but as bad as it is, in most cases it's very treatable. The same can't be said about cancer.
As a parent, seeing what these kids battling cancer are enduring is absolutely heartbreaking. My heart breaks for them and their family. No child or adult for that matter, should ever have to face such a devastating illness. I simply can't imagine going through something like that.
While we were there yesterday, there were several small children, receiving treatment for cancer. It's a very somber experience and as a parent, I understand the gravity of what they might be facing. Unfortunately, Gavin does not.
Gavin likes to talk and talk and talk. He doesn't much care who he's talking to, who can hear him and he certainly has no clue how his words can impact others.
The entire time we were there yesterday, Gavin's singular focus was on whether or not he would need to have his blood drawn. At every turn, he was telling the nurses how he has *so many bad memories of this place because he doesn't like getting IV's. *
I get where he's coming from and I know he gets hyperfocused on his personal situation.
The first time he started talking about that, I tried to shush him, without drawing any attention. He eventually stopped complaining about his memories of IV's but as soon as he saw someone else, he'd find a way to complain to them about his history of having to get IV's.
Again, I tried to shush him but he just wouldn't shut-up.
As soon as we got into our room and were behind a closed door, I privately laid into him. I was so frustrated because he would not shut up about the goddamn IV's. I get it, I do. He doesn't mean anything by his complaints other than to share what he's thinking. Frankly, it's probably also a sign of his anxiety or worry that he was going to need blood work while we were there.
Gavin's developmentally about six years old and that makes his eighteen year old body, very deceiving.
The problem wasn't that Gavin was fearing these things or even that he incessantly talked about them in a very *outdoor *type voice. The problem was that he was saying these things in the presence of toddlers there to get chemotherapy.
I can't say for sure that any of the kids or their parents heard what Gavin was saying but I pray they didn't. I can't imagine being in their shoes and hearing someone who looks like a grownup, complaining about how he'd had IV's in the past.
Everything is relative and I get that but at the very least, this would come across as insensitive.
These familes are going through so much as it is, the idea that we would have anything to do with making things harder, through our words or actions is heartbreaking for me.
I explained to Gavin that I understand he doesn't like IV's and by now, everyone within earshot knows he doesn't like IV's. I also told him that there were kids here fighting cancer and complaining about a needle stick is not appropriate, under the circumstances. I tried to get him to see things from their perspective but he lacks the capacity for things like that.
I told him that we were *not *going to complain about anything while we were here. If he wanted to talk about it on the way home, that would be fine but as long as we were here, he wouldn't say another word about IV's.
This isn't the first time we've been in this infusion lab, while Gavin complained about getting an IV and the kid across the hall is receiving chemotherapy.
Gavin doesn't mean to hurt anyone and while he looks eighteen years old on the outside, he's about six on the inside. He lacks self-awareness and really doesn't grasp the concept of how his words or actions might impact those around him, similar to someone who's actually only six years old.
Life is all about perspective. I've said that a million times. The reality is, Gavin is dealing with more than most will in an entire lifetime. He has multiple health problems that have come close to ending his life in the past and could realistically do so at anytime. We're very aware of this. The stress, fear, worry and pain we experience on a daily basis, are things I can't really put into words.
At the very same time, there are few things in life that can provide you with more perspective than spending time in a hematology/oncology, outpatient infusion lab. Even with all we go through, it's nothing compared to what these brave kids and their families are enduring.
I'm not usually someone who believes in apologizing for my special needs kids. They are who they are and should never apologize for things outside of their control.
Having said that, my deepest apologies to anyone who may have been hurt by Gavin's words yesterday. He would never say something with the intention of causing anyone pain.
