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

Dear Dentist: Raising A Son With Special Needs

Dear Dentist:

Guess what?  Willie had to spend a week in the hospital due to the infected tooth you would not treat. The infection spread to his blood and he needed surgery to drain the abscess. Your name came up way too many times in the hospital, by Willie, and even medical staff there.  If only you had agreed to help him.

Guess what else? Willie did phenomenal in the hospital. He accepted his IV with grace, tolerated the multiple blood draws per day, had 2 successful Cat Scans, and acted completely "normal" when he had to be put under general anaesthesia for his surgery. 

Willie did not refuse the IV, as you had assumed and stated at our office visit due to your experience with "people like him." (People who are big and strong...) And when he came out of anaesthesia, he was groggy but fine, not combative as you again suggested from your experience with "people like him."  Willie did not need to be restrained, as you implied. 

In fact, Willie was kinda famous at the Hospital. He responded so positively to all the respect, dignity, and advocacy he was treated with by all the medical professionals.  They were impressed.  Numerous nurses went out of their way to spend time with Willie talking to him about his favorite subjects and helping him to get through some painful procedures. So what I figured out is it's you, not Willie, who is difficult.  It's your lack of knowledge and comfort with the Disabled Population that is really the problem.

Problem is that Willie is stuck on you. The hospital stay, though amazing and effective, was traumatic. It is hard not to blame you for the infection that caused the hospitalization due to your refusal to treat Willie. And see, Willie just needs you to say: "Sorry, I made a mistake,' so he can move on."

Oh Dr. Dentist, I wish you would...

Sincerely, Willie's Mom

This Dentist: Raising A Son With Special Needs

This dentist was different right from the start. Besides his reputation in treating those with Disabilities with respect and dignity, he just came right over and sat besides Willie and started talking. Willie, due to his intuitive preciousness, knew immediately that he was safe.

By the time they were done talking, 20 minutes later, Willie happily opened his mouth as best he could for this new dentist. There were no underhanded comments about people like Willie or an overt unwillingness to treat Willie's infected tooth.

This dentist took even more time and explained to Willie everything he was going to do to Willie at the next visit. He didn't dumb Willie down. Later this dentist said he knew Willie was that intelligent that he needed to know every detail to best handle his anxiety. Every step of the way, this dentist explained that if it gets too much for Willie, he will come back another time and do the procedure under general anesthesia.

After Willie happily departed the room, I held this dentist back and asked why not just put him out and get it over with? I mean, at this point, that is what I want. Well, this dentist had quite a response.  He told me that he wanted Willie to be able to walk into his office, to get his root canal, and be treated just like everyone else. I guess he meant that he didn't want to assume that Willie couldn't do it. That he was not afraid of Willie.

This whole dental debacle have sparked and triggered Willie's PTSD.  He is again constantly talking about his past and the abuse he went through. The other dentist is now in the "abuser" category in Willie's mind, despite what I say.

Thing is, I realize how defensive and afraid I have become too. Walking into this new dentist's office was plain frightening. During the entire appointment, I had to pinch myself to make sure things were truly going this well. I hugged Willie's new dentist.  For we finally found one. Let the healing begin.

The Dental Ordeal: Raising A Son With Special Needs

Within 5 minutes of meeting with the Oral Surgeon for a consult on Willie's decayed tooth, he turned us away.

"I have experience working with big and strong people like him, and I cannot help you," is what he said to us.

When I asked for a referral to a dentist who would help Willie, that Oral Surgeon said "call your dentist."

As we awkwardly left the office and returned to our car, Willie asked me some hard and insightful questions I cannot find the answers to.

"Why is Dr. L able to help my brothers and sister, but not me?"

Then he commented "oh great, he wants to send me to the hospital to fix my tooth where they will restrain me."

And all by himself, later on, unprompted by me, Willie said "Why do some people think those of us with Disabilities are DANGEROUS?"

This was the second dentist that turned Willie away.  The first one literally said to me after looking in Willie's mouth and deciding he couldn't help him, that he had experience working with CATTLE so Willie's agitation and fear were something he could handle.

I need someone to fix Willie's tooth.  Our regular dentist said he knew no one who could help Willie.

I've thought of calling the newspaper to report this blatant DISCRIMINATION.

For now, I will write about our horrific experience here.

I am also sending a frank and firm letter to the Oral Surgeon to advise him to get some SENSITIVITY training.

Willie keeps asking me what will happen to this Oral Surgeon, as he knows he has been mistreated?

Please let me know if you have similar experiences and what you do to solve them.

Forgiveness: THE MAILMAN

The Mailman stopped over the other night to ask Willie for forgive-
ness. Willie, in his sweet way, accepted the kneeling and crying man's sincere apology.  That Mailman never once referred to Willie as disabled, did not make excuses for his unkind words, and never asked us to detract our complaint against him to the United States Post Office. Willie and the mailman spent over an hour talking about their shared interests, including guitars. A couple days after this, this card came in the mail for Willie from this Mailman.

This article came out in the paper the next day.  Forgiveness is one of the highest virtues. Apologies can make a difference after all!

http://www.pennlive.com/news/2018/03/dispute_over_mailmans_ridicule.html