Use Your Words....Better: Raising A Son With Special Needs

Willie flipped 2 picnic tables yesterday. I think it was only 2. Unfortunately he did this at the Farm he attends once a week, and darn, we were hoping he could start going there more often sooner then later.

True story is that his staff told him he couldn't sit in the front seat of the Van for the outing. TRIGGER!! Full PTSD/AUTISM MELTDOWN. Flipped the tables. Why Willie wants to, needs to, and must always sit in the front seat of a vehicle is for another day. Why not getting to sit in the front seat has become a trigger for him is for another week.

For today, we are moving forward. Thing is Willie is so full of remorse and self-disdain. I am told that he did great by quickly calming down after the incident, within 15 minutes. He was able to go through the rest of his day without any more problems. Willie has made progress in his recovery time and his ability to let things go. Sort of.

The minute Willie got home from this wonderful Farm program, he turned to me and said: "It wasn't a good day. I flipped the picnic tables." Since I hadn't yet heard what had taken place, I tried to process with him with the limited information I had. Willie's guilt was bubbling over, as after any incident where Willie knows he has done something wrong. I wasn't sure how to help him deal with it. I knew we couldn't blame the Farm. And to hold Willie accountable is tricky. When I told him he cannot act like this, he claimed he couldn't help it. Can he help it? I was left with a muddy puddle of ick.

Then one of Willie's angels called me. She happens to be the Supervisor for his Behavioral Consulting Team. She explained in detail what had occurred and turns out Willie's recall was rather accurate. When I asked her how to get out of the muddy puddle and to find a way for Willie to stop acting like this, she had the perfect response. She said Willie needs to use his words better and to ask for help.

Now that's a pretty funny thing to say to a person who has such a sophisticated grasp of language as Willie. It also smacks of what you say when little kids are learning to talk and handle their emotions. But the truth is when Willie gets upset, scared, or angry, he forgets how to talk appropriately. Instead Willie has become skilled at talking about how he wants to hurt himself. Sometimes he even threatens others with his complicated high-end verbiage. Every now and then, like yesterday, he acts like a toddler and looses it and flips the table. Problem is he is not a toddler. Willie is 6 feet tall and 225 pounds. He flipped the tables. It was scary.

After I hung up the phone, I immediately ran downstairs to Willie's room to share this new mantra with him: "Use your words better and ask for help." His whole body visibly relaxed and he was finally able to go to sleep after a tense evening. Then this morning immediately upon waking, Willie told me was still upset about yesterday and I again repeated his mantra. He smiled and turned away and continued on with his day.

Reading Between The Lines: Raising A Son With Special Needs

Willie talks, actually quite a bit.
Willie understands everything.
Willie is a 26 year old adult with a Disability.
Willie's has rights.
Willie has Brain Damage.
Willie's Executive Functioning mechanisms are impaired.
Willie chooses to lay in bed on his iPad when he has nothing else to do.
If you asked Willie if he wants more in his life, he would say no.
Yet he often says "my life has no meaning."
Or "you have no idea how lonely I am."

To get Willie to agree to go to the Night To Shine Prom next week is like pulling teeth. Yet he is clearly lonely. Executive functioning error. His words do not match what he really wants. Fear is the driver. He needs an interpreter. That is me.

Willie has an amazing team working to make his life more meaningful. One of his behavioral consultants has even created a paid job opportunity for him if he will just take it. But if we ask him if he wants the job, he refuses. It is scary. It is hard. Willie's brain says lets just stay in bed. That job opportunity is way too out of my comfort zone. Because we all understand and really "see" Willie, we make up his mind for him. We give him tons of advance warning before the actual job interview.  We do a drive by so he can lay his eyes on the site. We give him processing time to think about his choices. We plan to support him at the interview.  We will help him to see that it really is a good idea to take the job, to give his life more purpose. We can't really take his words at face value. Executive Functioning lapse. We choose to read between the lines of his feelings, words, and deficits, to create a life for him.

I am Willie's voice even though he can talk.
I am his Executive Functioning assistant.
I am Willie's advocate.
I have the responsibility of fighting for what I think he needs.
What is in Willie's best interest.
What a slippery slope this is.
But I know it is the right thing to do, at least for now.

Attitudes Are Contagious: Raising A Son With Special Needs

As we enter a new year, here's a feel good story right from Willie's life. This article illuminates that there are amazing people out there for our special needs adults and that taking the time to recognize one of them really can make a difference. And I know that this nurse, who was recognized for her extraordinary actions towards my Willie, will impact other health care professionals and teach them how to interact appropriately and positively with special needs adults. At least this is my hope. 

Read on:

https://www.pinnaclehealth.org/professionals-and-job-seekers/nurses/daisy-award-recognizing-extraordinary-nurses/the-daisy-award-honorees/daisy-award-honoree-highlights