I thought of all the ways I could write this post, and I decided just to wrap it around a screenshot from an e-mail I sent some friends on December 28, 2016. I am going to re-type it just following this in case the images don’t show up well for those who get my posts via e-mail, though a few of my readers may remember this e-mail already because it was a group e-mail that some of you were recipients of. “But right now, I just feel on top of the world with that in some ways too, because he’s been out of diapers at home for 3 weeks now, and been going out in public without them this past week….and it’s been going so super, super good. Sometimes though, I get frustrated because it’s like people won’t give him the same level of trust with his potty training skills they would a “normal” kiddo. At his occupational therapy today, the therapist wouldn’t let him go into the ball pit because she didn’t I guess trust that he wouldn’t pee in their pit. But he hasn’t been having accidents in public, and he’s been doing so good at home, it just really was hard for me. She would have never said the same thing to a kiddo who didn’t have his disorders. But that’s the extent of my drama right now. “
I decided to also add a screenshot of the last order of diapers we ever made, which was during the time I was buying pretty much everything that wasn’t groceries at Amazon.
I know there’s multiple sides to this story. Some will sympathize with the OT because they too would feel that a diagnosis list like Tony’s merits extra scrutiny and/or caution for any type of milestone. Please note, I have never named this OT on this blog nor will I because I have taken a public position against how this was handled and I know that the details will be recognizable to not just her but every therapist working with him at that clinic in 2016. My desire here is always to share what things look like from our end and never to shame a person on-line. And in the interest of that, I would say that in being able to see the OT’s perspective, it is important for others to recognize that real damage can be done to the feelings of self-worth and esteem of the disabled individual when they go through this type of situation.
Parents of kiddos with certain levels of challenges may more easily see my side of this because they know what it’s like to have every accomplishment their kiddo makes, every inch of progress, doubted and to have proof required in excess of that which is required of a non-disabled kiddo. They will know what it feels like to have others refuse to see the progress. They will see the emotional toll it takes on their children (who definitely will recognize and understand when others doubt them and can have very strong emotional hurts from that). Other parents may also feel the additional pain of having many people be more sympathetic to the position of the person with the doubts than the family because it can make these circumstances feel even more isolating and under-supported. I know even if I personally can understand on some level the doubts and concerns another person has, it always still hurts me as a person and a parent and my feelings are just as worthy of validation and support and I imagine other parents may feel the same way.
What isn’t in that screenshot is how I handled the situation that day. The OT involved would not allow our son into the ball pit unless I agreed to put a diaper on him. I refused to put a diaper on him because I knew it would be like saying that I didn’t believe in him either and that I wasn’t going to stand up for him to others who doubted him.
The ball pit was one of the things he loved most about that clinic, so I wasn’t surprised when she told me it was the worst session she’d ever had with him. She’d made it clear through her words and actions that she didn’t believe in his ability to have progressed in that manner and that combined with being kept from the ball pit when other kiddos were not really upset him.
People still ask me if he’s potty trained and if he has accidents at night and they’re almost always surprised by the answer- and he’s been out of diapers for nearly 7 years now. Yes, he’s potty trained. No, he doesn’t have accidents at night, and no he doesn’t have accidents in public, and we got rid of the diapers once he’d demonstrated the ability to wake up and use the bathroom at night without wet diapers.
Everyone has the right to feel their own feelings and their own thoughts about this. Including me, but especially including Tony. Even if I can see the perspective, my heart still hurts some from that kind of response and I know his does even more because it’s about him. Sometimes I think it’s easy for people to get hung up on Tony and his behaviors, but it is important for everyone to know that his behaviors are often how he as a non-verbal individual chooses to communicate first (because it’s often quicker and more immediate when he’s really upset than walking to his speech device) about how he feels about a person doubting him (because he’s really pretty good about picking up on that) and or holding him to a different standard from even other kiddos he sees utilizing the same types of services.
