Friday, October 12, 2018

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

Friday, September 7, 2018

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.

Monday, August 20, 2018

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.


Monday, April 2, 2018

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

Wednesday, March 28, 2018

THE MAILMAN: Raising A Son With Special Needs

When my husband picked Willie up after the incident described below, Willie's therapist exclaimed: "This guy can't get a break!"  It's true, Willie had been abused by his former group home, from which he is still healing over one year later.  His PTSD diagnoses, resulting from this abuse, has left him fragile and vulnerable.

The most moving remark Willie made when processing this sad event, included his statement about how scary this Mailman was who verbally accosted him out of nowhere.  I assured Willie that he was safe but Willie pointed out that he does not feel safe as "the mailman was so unpredictable."  Again my Brain Damaged 25 year old adult son was so clearly correct and insightful.

Article about Willie's unfortunate encounter with the Mailman

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




Tuesday, October 31, 2017

Back To The Future:Raising A Son With Special Needs

Tonight is Halloween. My 4 children have graduated from trick or treating, as our youngest is in High School.  Finally. First year ever. Yet, Willie is back home living with us and wants to go trick or treating. Thus, I am back to my new future and will be the lucky companion to take Willie trick or treating.

Halloween is a trigger for Willie and for me. He loves dressing up, even when it is not Halloween. His costume has not come, so there is that. He will dress up tonight as a rock and roll STAR, in lieu of that costume that just won't seem to ever arrive. Willie loves candy. He loves to eat endless amounts of it. Ugh, I hate that. As I walk the streets with him tonight, I am full of shame. For what 24 year old still goes trick or treating. So I will look down as I pass neighbors and others I may know as I take my 24 year old trick or treating.  For he cannot go alone. He needs supervision. Supervision he so desperately hates and resents, yet knows is necessary.

Some have told me to embrace his joy about Halloween and lack of insight about how inappropriate it may be for an adult to trick or treat with his mom. To shed my embarrassment. Some have said you are giving him a great gift.  And I will stick with that version of my new future.

Trick or treat!

Thursday, October 19, 2017

Just Beep That Horn: Raising A Son With Special Needs

Transitioning in general is a challenge for Willie. Getting out the door when his driver arrives to go to his day program and his fitness program can be super problematic.

The complication is that at Willie's old group home, there was lots of "rushing" that Willie perceived to be bullying, and almost abusive. This morning when I knocked on his door to make sure he was getting dressed, he called out: "don't rush me." I said: "you are safe." He responded: "triggered." This is our banter back and forth to deescalate the many times during the day when Willie is triggered by seemingly innocent demands and environmental stimuli. It helps tremendously to deescalate him. His PTSD is alive and well.

So yesterday morning, at the suggestion of Willie's wonderful behavioral team, Willie's driver beeped her horn to prompt him to go to her car. It was a carefully orchestrated behind-the-scenes maneuver. Thought up by one specialist. Communicated to Willie's driver by me, so she would suggest this new approach, not big, bad, triggering mom. Texts back and forth that she may need to beep extra long and loud. And then TA-DA, magic.

Willie heard that horn, and within 2 seconds, called out to me: "better get going, see you later." His chipper voice was full of liberation and self-confidence. It was a giant coup. For months and months, we have been fighting over this very transition. And now Willie owns it, controls it, and is succeeding at it.

WOW! Recovery and healing are good. And possible.