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.

Tuesday, April 25, 2017

Dear Sir: Raising A Son With Special Needs

Willie recently moved home from his residential and day programs due to emotional and verbal abuse. This letter is my response to what happened to him under their care:

Dear Sir:

Thank you for screwing up my kid. You made him so afraid that now he keeps thinking he isn't safe anywhere. You talked to and viewed him like he was a violent, out of control person, and now he thinks he is that. You told him he belongs in a mental ward and he believed you. You told him that the you would call 911 on him. But you never did. You only threatened, which is more intimidating and WRONG. You joked with him that every time a siren went by, that they were coming for him.  Now when he hears a siren, he freaks out. You told your friends on the phone that you couldn't hang out with them because you had to take care of a mentally retarded 24 year old.  He heard you say that.  Remember his ears were not broken too.  Now he quotes you all the time as he puts himself down.

He has regressed. He has PTSD.  He is traumatized, as someone would be who suffered from emotional and verbal abuse.  He has painful flashbacks. He is suffering. He is wondering why.

Dear Sir:

I hate you. And I wish I could tell him why you did these things.  Do you even know?

Monday, April 10, 2017

Passover: Raising A Son With Special Needs

Ask any Jewish person, and they'll tell you missing Seder with 15 of your nearest and dearest is heartbreaking. Ask any Special Needs parent, and they'll tell you missing something this important due to your Disabled child is equally devastating.

I've been feeling very sorry for myself. The idea of driving anywhere with Willie in the car with our family is impossible, as he heals from his latest, very real, trauma. Thus the journey to Connecticut to celebrate Passover with my large, extended family, a yearly tradition, was squashed.  

You can ask any Special Needs parent again, do they ever learn anything wonderful from having their Disabled child in their life? Sometimes the answer is yes.

I was going to skip doing a home Seder entirely, as my husband is out of town, and I just don't have the energy. My 14-year-old daughter, however, yesterday told me she had other plans. And so I went to the grocery store to gather the items for the Seder plate and for making Charosets, (https://en.wikipedia.org/wiki/Charoset )a time honored tradition and necessity for any Seder. I then taught that lovely girl had to make that Charosets. We assembled the Seder plate. She is in charge of leading what will mostly be a very short Seder. 

I'm done feeling sorry for myself. Sure, I miss all my lovely family celebrating Passover tonight, I will miss all those amazing traditions, songs, and inside jokes. But thanks to Willie, my daughter has made what could've been a sad evening, something full of hope. Her middle name is Hope. She lives up to that word every single day.






Tuesday, March 7, 2017

Birthdays: Raising A Son With Special Needs

Birthdays are important days in our family. You get to pick out your favorite meal or restaurant, along with your favorite type of cake. You get lots of presents. Even more attention. Everyone is on their best behavior and the birthday person feels oh so special. Except not this year. For Willie is here now, every day, day in and out, soaking up all that attention, good will, all those narcissistic tendencies that the birthday person deserves.  In case I thought things were going smoothly with Willie home, my daughter rudely reminded me yesterday that this is not the case at all.

Heidi turned 14 yesterday. She is a tough cookie, having been raised under and through the tumultuous energy of 3 older brothers. Heidi doesn't cry. She is as even as they come. A happy light, making her way in this world both independently and lovingly. But yesterday all bets were off. Not only did she cry lots, her mood was all over the place, and happy was not in her repertoire. Even though she had presents galore to open and a favorite restaurant for dinner, she felt bad, sad, and mad!

This was all in reaction to Willie.  I knew something was wrong when she was super quiet in the afternoon. But as we all loaded in to the car to go out to dinner to celebrate her birthday, Willie in the front yet again, she just lost it and ran out of the car. For besides silently demanding the front seat, Willie had brought all the attention to himself, as usual, and complained about it not being his birthday.  The rest of the evening was a musical chairs version of our family with 2 cars being taken to the restaurant, Willie storming out of the restaurant at one point, my husband rushing him out the restaurant before the surprise birthday dessert came, and then some.

At one point during her tear filled rants, Heidi said something like "for just one day, I want to come first, have today be about me, sit in the front seat, be the most important."  For just one day. But Willie doesn't allow that.  As she repeated "he always gets his was," my heart broke in two.  For she was right, from her perspective it seems like that. And for that one day, her special birthday, she was right to want to be the priority.  But there is not enough air or room in our house, in the car, in the restaurant for them to both be first. We all make pretend Willie comes first, bowing to his moods, sending platitudes we don't necessarily mean his way, allowing small concessions all day long.  And my daughter let me know, in no uncertain terms yesterday, as she turned 14, that she is not OK with this.

Now we have to figure out what to do with all these ambivalent feelings and changes in our family dynamic, as Willie is not going back, as Heidi requested last night.  As I mend my hurt heart this morning, I take solace in the request Heidi made as we drove home from the restaurant, in a separate car from Willie, of course.  She asked if she could go back to our family therapist.  From that request, I hang onto a small tidbit of hope for our family, as we timidly navigate our new waters.  Thank you Heidi for being brave enough to speak the truth.