Truth be told, for the past year I didn't have the heart to write. I couldn't find the words to write to tell you what's been going on. Worse yet, I think I started to lose sight of the "joy in the journey."
I tried several times to sit down and actually type, but nothing came. The connection between my heart and fingers seemed severed. Not only could I not tell you in words what was going on, there didn't appear to be any point to be made, any conclusion to draw, or even any principle to learn from all of the E-Ticket action that's been going on - and by action I mean as in "twenty-nine men died in action" kind of action!
But, luckily - at least for me - that all changed yesterday afternoon.
But I'm getting ahead of myself, but first this disclaimer...
|The following blog post has been rated PG-13|
For the past year my wife and I have been trying to get a new Occupational Therapist, or at least a Speech Therapist for Ethan. Since we lost Melinda to a move across country we have not been able to find, or keep a good therapist who gets Ethan. In the spring we finally secured a young lady who seemed to be working out perfectly, then all of a sudden, the phone call came. She was changing jobs and would no longer be able to provide services to Ethan.
This was a dramatic blow, because while we had her we had been working on language problems, and had been making a breakthrough. No longer, when Ethan was upset, or agitated, did we just hear him swear at us. We had been making headway. At least now he could say,
I'm frustrated because, Mom, you're incorrigible.Hey, it wasn't perfect, but it was a breakthrough - it was progress. Since the speech therapist left we have, however, been digressing back into the Drill Sergeant mode of communicating, though he will still throw in an adjective to express himself. Now it sounds something like,
DAD [insert loud screeching voice]As we searched for therapists, we were also out pounding the pavement looking for a good Adult Day Program (ADP). We met with a variety of people, visited sites, and submitted applications. The end results were always the same:
, you're a F%@#! That's because, because you're making me anxious.
1) Ethan is too low functioning for our programThat simply meant that his behavioral problems were more than they could handle. He cussed, and had meltdowns, so therefore he was too much for them.
2) Ethan is too high functioning for our programThis sounds different, but in reality it was just the same excuse. All their current consumers were so low functioning that Ethan's cursing and meltdowns would be more than they could handle.
My favorite response was from the ADP that specialized in Autism research and resources. Here is what they had to say after we completed the very lengthy application packet:
[Insert the sound of crickets here]
We heard nothing from them. Calls were placed, but never returned. Needless to say our frustration, coupled with Ethan's increased anxiousness, profanity, and the violence in his meltdowns was beginning to take their toll.
Finally, at the end of summer, we found an ADP that welcomed us with open arms. Not only would they take him, but they could provide transportation to and from the ADP. Tentatively, we set up a one week pilot program. For the first week my wife and I would provide transportation, and they would see how Ethan fit with the rest of their members.
On his third day at the ADP I was scheduled to pick him up. I pulled into the parking lot and began walking up to the main door, which was propped open. As I got closer I could hear somebody, not Ethan, screaming hysterically. As I walked in the staff was surrounding a member who was having an issue, and they were trying to calm her. Peter, the director of the ADP saw me come in and welcomed me and directed me to a side room where Ethan was sitting quietly reading a book.
I recall thinking wow, they seem to have this under control, and Ethan seems happy. Obviously they have their moments, but overall this just might be the place. The pilot program ended, and we made the ADP a permanent fixture in Ethan's schedule.
But as in every relationship there is the honeymoon phase, and then the growing pains.
The honeymoon phase lasted about a month! In fact we've struck several other "past the honeymoon phase" stages in just two months. It went something like this
The "Honeymoon" Phase
September 15 - What did you do today?
I had breakfast at McDonald's.
You ate breakfast at McDonald's?
No, Peter did
Did you go to McDonald's with Peter?
September 23 - What did you do today?
I got gas in the car, with Peter...
October 9 - Ethan who is your favorite person at the ADP?
Is he nice?
Does he take you with him when he runs errands?
October 15 - "Honeymoon Phase" officially ends
Enter the "you have little fights" Phase
October 16 - First Incident Report arrives in our email. Another member kicked Ethan's dinosaur book, so Ethan slapped him on the back.
October 18 - At home Ethan is frustrated about having to get off the computer, Ethan yells at me, and begins screaming. I ask for a hug, and the fight is on. He ends up taking a swing at me, and I wrap him up from behind with a bear hug. He grabs my arm and we roll on the ground while we work through the deep pressure exchange. The next day I am sporting a massive black and purple bruise on my arm where he grabbed me and squeezed trying to get out his frustration - it was visible for the next two weeks.
October 20 - Dad, look what I got at Savers? [Ethan produces a pink, blue, and purple fuzzy sword that makes giggling sounds].
Oh, you should tickle your mom with it, then tell her where you bought it, she'll love that.
October 27 - Ethan struck another member after the member dropped their backpack on the ground making a loud noise. After striking the member Ethan stood up and yelled, "Maybe that will teach you a lesson!"
Enter the "you don't pretend everything is peachy" Phase
November 3 - On field trip to Toys-R-Us, Ethan steals a DVD. A Service Provider from the ADP discovers it only after they return to the facility. They take it from him, but he is angry and pushes the Service Provider. After Ethan is dropped off, I discover he has seven (7) more DVDs hidden in his shirt. I confiscate them and he begins cursing, calling me his favorite queen-mother-of-a-all-cuss-words word. After placing calls to the ADP we discover they had no idea he had taken eight DVDs from the store. They agree to return to the store to make restitution with the unopened one they have, while I take the other seven back. $75 later, I left the opened DVDs with the Toys-R-Us manager advising her to donate them to the charity of her choice. Gratefully she was understanding.
November 4 - Peter modifies the support plan to have a smaller ratio of service providers to members when taking Ethan on outings.
November 10 - Ethan shoved another member when they wouldn't stop making an unruly noise.
November 17 - Ethan winces in pain as we kneel for family prayer. I ask him what is wrong and he tells me his legs are sore. I ask what happened and he tells me he played all day on the playground at the Phoenix Children's Museum during a field trip. You know, typical nineteen-year-old problems!
Enter the "you learn not to sweat the small stuff" Phase
November 30 - Ethan tries to steal the paper inserts from DVDs at Savers. When caught, he pushes the service provider, and punches them in the arm.
Peter modifies support plan to maintain an "arm's reach" distance with Ethan when on outings.
At home Ethan becomes upset because I won't allow him to use my tablet since he got in trouble at the ADP. Ethan growls and makes an angry face, and the following exchange takes place:
Why are you mad at me, did I take the DVDs from Savers?
No, It was me.
Did I do it?
No. It was F%@#$ me!
Hey, why are you saying bad words?
Because it was me,
Okay, but we don't have to say that word, we can simply be frustrated, right?He begins to walk away when I hear,
Seriously, do you need to say bad words?
Dad, I wasn't saying it to you. I said it in my head.
No, I heard you, you said it out loud.
No Dad, I said it to myself.
No, you said it out loud.
Dad, it wasn't me it was myself, it was my, it was my self portrait...He walks to the bathroom and points to the mirror, Dad it was him!
Enter the "Forced to be around each other after a disagreement" Phase
December 1 - Ethan strikes another member
December 2 - Ethan approaches Peter, to get his attention. Peter is addressing an issue with another member, and asks Ethan to wait. Ethan yells, "Peter G@) D@#%$," and then pinches Peter's arm. Peter tries to redirect him, and Ethan pushes him.
Minutes later another member approaches Ethan and yells at Ethan, to which he yells back "Shut up you F%@!"
Enter the "you get tired" Phase
December 3 - Another member is screaming in the activity room at the ADP. Ethan Yells "Shut up!" The other member yells back, "Shut up B!#@%!" Peter goes to intervene and Ethan grabs him by the collar and yells, "Peter, I'm not mad at you, I'm mad at her." The other member yells "F%@ #%$!" and Ethan retaliates by kicking her in the knee.
Enter the "your love is real" Phase
December 4 - Ethan arrives home and empties his pockets. They are filled with toys he claims another member gave him. Reluctant to believe him I confiscate the toys and tell them we will check with Peter to see if the member did actually give them to him. He curses God, and calls me a few foul words. A meltdown begins, and instead of telling him to stop, all I can do is sit and listen to him curse me, and tell me my wife is incorrigible. I start laughing.
I'm laughing because I'm pretty sure I've lost my mind after months of these never ending tyraids and shenanigans and I'm drifting off into that cold numbing dementia that results from drowning, in this case, in my sorrows...
Just then the phone rings. It's Peter!
Peter wanted to advise us of another minor incident involving Ethan, and that he will be present next week at our quarterly DDD review meeting to advise about Ethan's placement, progress, and any plan modifications that might be helpful. We ask Peter about the toys, and Peter tells us that Ethan and another member have become friends, and yes, the other member gave the toys to him. Peter says it is quite something that Ethan and this boy have become friends. Ethan is their highest functioning member, but has seemed to find solace in this young man's presence, while the other lower functioning members seem to irritate him. Peter proudly tells us he is seeing progress, and that they are coming to more fully understand Ethan so that they can better address his needs...
As the phone call ends I realize that there is one thought that has the power to unite us all.
You can either watch this video to see what has the power to unite, or simply read below. If it was me, I'd take the video...
The battle of life is, in most cases, fought uphill; and to win it without a struggle were perhaps to win it without honor. If there were no difficulties there would be no success; if there were nothing to struggle for, there would be nothing to be achieved - Samuel Smiles