Behaviors

This post is something that has been in my heart and on my mind a lot the last year.  Obviously things have been busy enough I haven't processed it all.

Then right before Aidan passed away, our long time DDA dropped us.

They claimed it was over us not working on the goals... not true. What was really going on was the HI didn't like the goals and kept fighting working within the boys medical needs and just doing her job.  It shouldn't have been that difficult, it's what she was getting paid big bucks for.  She would throw tantrums at me- even to the point of insulting and yelling at me, demand perfect behavior from the boys, obviously not being the example of what she expected from them.

Let me repeat that.  She was not exhibiting the behavior she was demanding from them.

She was also pushing them too far medically and setting off too many seizures for them to function at the level she was demanding.
The HI before her was awesome, and frankly all she was doing was just her job.  It helped that she was flexible and truly cared about the boys. :)
I was so busy with Aidan's care, I chose to let it go until she no longer would be with them.  It was after all only supposed to be a month more.  Can handle that right?  Well, didn't work, she stayed longer and trained the following HI to just ignore the goals completely... setting us up for her apparent plan to have us dropped.  It was so odd too- it's the HI's responsibility to work on the goals, she was basically saying she wasn't doing her job...

As I've worked with therapist after therapist over the years, they've all said, "behaviors aren't just behaviors, there is always some underlying issue causing it all."

I know this, it's huge.  Does the child feel validated and emotionally safe?  Are they getting enough rest?  Are they getting enough nutrients?  Are they having seizures?  Is their sensory issues coming from Autism or Epilepsy?  The list goes on, but these are things I've found to be issues for my boys.  Pretty long list for just one little person.
Then this part is really important.  There were certain nurses and that would always insist Aidan say please and thank you.  Let's see... the child was in severe pain with neuropathy of a 80yr old with diabetes when he was tested- and progressed to excruciating.  He was having so many seizures he could barely process a thought to get part of his requests (mostly for needs, some for relief from boredom- confined to a hospital bed 24/7 does that to a child) verbalized- which also progressed to the point of not even being able to at all.  He was on a ventilator/life support that caused it's own issues/side effects.  He had progressing global brain and muscle atrophy.  He also had huge sensory issues, even more than his brothers, because he was farther in the progression of the disorder.
He is also the sweetest, most kind and tenderhearted 9yr old boy.  Truly an angel on earth.
After experiencing his loss of communication years before I'd taught him to make sure he got the most important words out first, and then if he could manage please and thank you, awesome.
All of this trumps anyone's hang up about manners and insisting on being a parent to my children they are not.  So when people coming into our home who were hired to serve HIM, a dying child, it really peeved me they would do this.  He never asked for anything that wasn't their job to do.  The ones doing this weren't saying please and thank you to him... yet they demanded it of him.  Again.  Not leading by example... but being a bully.
Some things are far more important than others, and believe me, that is not one of them when a child is dying.

So I don't ever assume a child is "just being a brat," or is "just exhibiting behaviors that need to be trained out of them." As their OT says, you need to address the underlying issue first, not the other way around.