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.

Wednesday, October 11, 2017

Idiosyncrasies: Raising A Son With Special Needs

I prefer to view Willie's idiosyncrasies as just that, not signs of Autism, symptoms of OCD, or other such stigmatized terms. The power of the words we use when thinking about our children with special needs is worth paying attention to. I could easily scoff off all of Willie's strange habits with psychiatric labels, but I chose to think of them differently. I try to embrace them and sometimes even rejoice in these peculiarities.

Today I want to share Willie's strong interest in duct tape and electrical wires. When Willie is on his own at his day program and they go on a outing, he always comes home with duct tape. And not just any duct tape, but colorful, shiny, and patterned rolls. Willie also worries that his charger to his iPad is constantly breaking. His way to solve this problem is to wrap the charger in duct tape. I say nothing for Willie has figured out his own solution to this concern.  I say nothing as there is very little Willie can control in his daily life. I say nothing as what's wrong with obsessively wrapping wires in duct tape?
Eventually these cords get heavy, Willie decides they no longer work, and he instantly NEEDS a new one.  I buy him a new one. I hate to do so, but Willie again struggles daily with a semi-broken body and mind, and yearns to be a typical 24 year old young man. So the least I can do is to keep my mouth shut about his need to wrap his cords in duct tape month after month. And then when he requests a new cord, I owe it to Willie to comply with this very simple wish.

I chuckle out loud now when I see the duct tape remnants everywhere, spy the many extension cords he constantly buys from the thrift store, and watch myself patiently attempting to remove that tightly wrapped tape from the iPad chargers that still work. I could be angry and say something derogatory to Willie about all of these habits. Believe me I want to plenty of the time. Instead I am working on shifting my view and celebrating these idiosyncrasies. Most days....

Monday, August 28, 2017

Evolving:Raising A Son With Special Needs

As we know, all our kiddos are ever changing, emotionally, psychologically, physically, and spiritually. The following is Willie's most recent evolution:

Willie’s life has been defined by medical trauma and more recently by psychological trauma. At 3 months of age, he seized uncontrollably for over 2 hours.  This pattern of status seizures continued for the next 2 years, always ending up with a hospital stay.  Then when Willie was two, he developed bacterial meningitis which caused him to be in critical condition and a coma for over a week.  After over 3 weeks in the hospital, Willie was released, but would always be marred by the infection.  

Then when Willie was almost 24 years old, he suffered emotional and psychological abuse  and trauma through the Bridges Program.  The extent of this abuse will never be completely revealed but Willie’s symptoms characterize a victim of abuse. The scars run deep.

It is no wonder that Willie’s primary emotion is fear.  Anyone who knows  Willie sees those big brown eyes registering this emotion.  The behaviors of concern that Willie exhibits are all designed to keep him safe and in control.  It is important to understand this when supporting Willie.

Willie was given a PTSD diagnoses in July 2017 based on his life experiences.  There are many triggers that cause Willie to react to situations, words, and people revolving around his perception of the trauma he experienced at the Bridges program.  Willie’s insistence on withdrawing from the world and refusal to take risks and trust people is rooted in the above.  Willie participates in trauma therapy and healing and progress are definitely happening, slow though it may be.

In the 2017 FBA conducted by the Cornerstone Agency, the function of all behaviors appears to be escape with attention being a close second for both verbal aggression and self-esteem which makes sense. He curses, yells, and makes derogatory comments about himself in order to gain attention from others so that he can escape tasks. In other words, Willie scares people into letting him do what he wants. The secondary function for both socialization and hygiene is sensory meaning he is wanting to escape other people/showering in order to access feelings he finds reinforcing such as the euphoria of being on his iPad or the safety he feels when alone in his bed. After explaining these results to Willie,  he said that it makes sense because he doesn’t ever feel safe. When asked why he tries to escape everything, Willie spontaneously said because he doesn’t ever feel safe.

Willie feels like he fails at everything in life.  His keen knowledge of his limitations contributes to his poor self-esteem.  This recent conversation highlights his struggles: Willie was complaining about his younger brother starting a new job and said he would never get a job.  When challenged about this, Willie then said well maybe he could work from home, restoring old guitars.  Willie’s self-comparison to his brothers always leaves him feeling lesser.  Additionally Willie’s strong interest in guitars and music coupled with his fine motor and emotional regulation limitations leave him unable to reach his dreams.

Willie’s senses have always been heightened.  He sees, hears, feels, and senses things more acutely than most. Although his feedback to others is dwarfed and ofttimes limited, Willie still is able to understand most situations and people. Because his limited feedback and disabilities are so loud, others often see Willie as lower in his ability to process and even take things in.  This is never true and must be remembered when dealing with Willie.

Saturday, July 15, 2017

Dear Sir Responds: Raising A Son With Special Needs

I received an email the other day from Willie's "Dear Sir." He had read my blog and wanted to clarify his point of view regarding what I had written. Dear Sir claimed to have made only one threatening, inappropriate statement to Willie and apologized for that. He denied any and all other accusations I made. Dear Sir told me plainly that I needed to rid myself of the hate in my heart.

The day I received that email was already a rough one for me, dealing with another of my kid's serious issues. Thus Dear Sir's response sent me reeling.  I immediately thought to myself how could both his and Willie's versions be true? It made me doubt Willie in a way I never had.  For you see, Willie did come home from his group home damaged.  He received a PTSD diagnoses from his new Psychiatrist.  He immediately falls into fight or flight from the simplest of triggers. Something happened. And Dear Sir claims nothing did.

Lucky for me and our family, our team here is excellent. I immediately reached out to them with my confusion.  One of them said so brilliantly: "We will never the know the truth. That doesn't matter. What matters is Willie's perception.  He experienced trauma and abuse and we will honor that and help him heal." Wise words.

And the coolest thing is Willie is healing.  It feels like it's taken forever, but it's really only been 5 months.  He is happy now a lot.  He is more flexible. We can push his comfort zone.  His whole demeanor is different, like his old, sweet self.

Regarding Dear Sir's request to rid myself of hate, I have already done so.  Like any grief process, I have moved through and continue to experience anger, acceptance, forgiveness, and so on. What I have learned is that trauma is in the eye of the beholder and regardless of Willie's Intellectual Disability, his experience is real and we must honor it.  I don't blame you Dear Sir anymore.  I see a whole system that failed Willie. It's a tough world for young adults with an Intellectual Disability. We are just so blessed that we brought him home to heal, just in time.