Ariana's Posts

What Can You See?

Posted on by Ariana
Ariana & Tony, Nov 5, practicing sitting and waiting for 3 minutes in an area of the community his never been willing to walk into before, photos by Ariana

I’m going to start this off by asking that my loved ones who recognize the situation below make no comment. I will not be giving any identifying information because my aim is to educate and nothing more, and I will definitely strike down any public comment that doesn’t honor the spirit of that.

Once upon a time- when doesn’t matter here- I objected to a therapy program being used with our son. We were seeing behavioral regressions that in my opinion were directly related to the programming being used. Please be aware that opinions on either side are not facts nor am I presenting them as such. The official position from the provider involved is that they cannot say what was causing the regressions but they believe wholeheartedly in the programming. I can truly say that I do believe them to be very sincere in their belief in the ability of this programming to benefit our son when they recommended trying it. And I will also add that I don’t personally challenge programming without a sincere belief that a change needs to be made to ensure our son’s progress.

When I challenged the programming after behavioral regressions of a very concerning nature started to appear, my recollection from a meeting to discuss the matter was that initially I was told there would be no modifications and that if I wanted something different I could go somewhere else. I brought in outside agencies because it was our son’s desire at that time to continue working with the provider, and the provider involved was willing to negotiate some changes at that point, but then added the following condition:

Any provider who has ever worked with our son knows that more than 5 days in a row of stalled progress are common before he will pick back up and resume an upward trend. Not only is motor planning an issue for him, sometimes if he’s very upset about something he’ll just stop cooperating with therapy tasks for a period of time. In the opinion of our family (and again, opinions are not facts), it was a condition which seemed designed to force him out of services with that provider.

What does a condition like that do to any trust the family might have? How would the individuals involved feel if they were on the receiving end, and more importantly, would they have wanted to see the same thing happening for them or their child?

The truth of the matter is I have darker things than this I could put up screenshots for. And certainly I have had providers who we sought to receive care from look at Tony’s level of functioning or his behavioral challenges and decline the case. How all of that emotionally feels is, honestly, it’s pretty rough sometimes. But as I have been listening to the beautiful sentiments of Laura Pausini lately in her song “En Cambio No,” what I would prefer to focus on is just how thankful I am for the providers who have stood by us and with us, who have looked at my son and seen that he has good things to offer the people around him. In my opinion when somebody does something like that, they are not going to see me, my perspective, or my needs anyway no matter how many screenshots I put up before the world, and in my opinion they aren’t showing that they care about the true needs of our son or our family.

Some of our Halloween night prep, which was directed towards giving him practice handling elements that might be more visually overwhelming at times with fewer people, such as waiting outside of those houses during walks, and times with more people such as trips into Spirit Halloween. We didn’t practice the communication components beforehand because when something is guaranteed to get Tony something he wants, he typically only needs to be shown the communication sequence one time before he will start using it independently.

Everybody is a person here. Any provider can refuse to be involved and I respect that. And if you are a parent just starting on this journey with an individual deemed lower functioning, it’s probably the last thing you want to hear because you might be feeling desperate for help. I get it because I have felt that way too. But still you need to understand this could be what your journey looks like, because you may have no choice but to do what I have done and spend a lot of time educating yourself about different therapy techniques so that you can step in to fill any gaps and help your child reach towards the potential within them.

I can’t give you easy answers for some of the emotional things you might be feeling on this journey, but I can maybe give you some guidance to cover up some of the physical stuff that might be going on. This was from yesterday, when our son was running into the bathroom during PT and he closed the door forcefully while running into the bathroom and I didn’t get out of the way quick enough. So for covering a bruise that is forming and as it develops, the important thing to remember is opposites on the color wheel. In this case, the line from the door was mostly red yesterday with small amounts of purple. So, pic number one is before makeup, pic two is after I have dabbed on some light green and yellow toned green powders over my foundation primer, three is the finished makeup in full sun so you can see the end result. After the primer picture, I did one more application of the powder mixed in with some foundation, covered it with straight foundation, and then set with powder. If you are using a cream product or mixing your own as I dd, you want to set with a translucent powder before applying your final foundation product. Please note, I did not color correct for my veins in my temple, I like to have a foundation look that doesn’t look like as much coverage as it actually is.

Ariana