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.

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.

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?

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.

Welcome to Voices of Special Needs Blog Hop -- a monthly gathering of posts from special needs bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about having a special needs kiddo -- from Sensory Processing Disorder to ADHD, from Autism to Dyslexia! Want to join in on next month's Voices of Special Needs Hop? Click here!

http://www.thesensoryspectrum.com/sensory-bloggers-blog-hop-information/

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.

Ice: Raising A Son With Special Needs

Willie moved home. It's been 8 years since he lived with us. This has been building. He has deteriorated in his program over the past 2 1/2 years. The last 6 months were particularly perilous, having moved to a new residential provider. Long story. Willie experienced trauma. Needs healing. So we have moved him back with us to wrap him in love and safety.

I don't like living with Willie. I dread it. It makes my life immeasurably harder by the amount of food I must prepare and monitor, the amount of laundry I must take care of, the books I must pick up, the requests and demands I must contend with. It is exhausting and overwhelming. But it is right for now.

The ice issue is a toughie however. Willie likes all things in excess. So when he fills his giant cups, steins, flasks, what have you up with ice, they are full to the brim. This usually creates a mess, as spilling naturally occurs. The other problem is there is no ice left for the rest of us. As I contemplated what it would be like to have Willie here full-time, I worried about the ice. It seemed a problem I couldn't solve or one I couldn't let go.

As with all things with Willie, I do not correct or criticize. That is a given, if you want to have a peaceful and loving relationship with him. Poor guy is so defensive and super sensitive, more now then ever. And guess what? The dreaded ice issue is actually going fine. We are not running out of ice. The messes are minimal. Somehow, Willie's need to use an exorbitant amount of ice could be lessened as he knows he is not leaving anytime soon. Perhaps his need to use all the ice was because he was anxious about leaving the nest, as he has done off and on for the past 8 years. Perhaps all my concerns about living with Willie once again, will play out like the ice. Perhaps Willie feels so comforted to have been truly heard and seen that he will be more pliable to our house rules then I had considered. Perhaps....

Fingers crossed. For it has only been 6 days.

Extra-Large: Raising A Son With Special Needs

Dressing Willie in nice cloths has always been important to me. It's true that if he looks good, people will respond better to him. Because Willie hates trying on clothing and even taking him shopping has it's perils, I often find myself wandering the aisles on my own, providing nice, cool cloths for my Willie.

Willie has always struggled with his weight. Food is a trigger. Food is a preferred activity. Excess is a given. Walking is a non-sequitur. Any exercise at all is frowned upon. When your body is hit with brain damage and doesn't cooperate well with your mind, why bother moving it more then you have to? I get it!

As I have shopped for clothing for Willie through the years, I have made my way up through the sizes. First, I had to buy Husky sizes when he was in Boy's clothing.  Then I always had to find pants with elastic that  still looked fabulous. These days Willie prefers a belt and ripped jeans along with his brown, woolen cloak, topped off with his awesome cowboy boots.

Lately, Willie has been secretly eating foods in the middle of the night. We were informed of this last week. Cookie Dough. Ice Cream. Shrimp. Hoping he isn't eating it raw and frozen. This disturbing new trend only adds to my worry about his increasing size and health implications.

So yesterday off I went on another shopping trip. I bought a new size for my Willie: all Extra-Large cloths. My heart has dropped. For even though, I saw sizes bigger then Extra-Large hanging on the racks, I know that Willie needs to stop putting on the pounds now more then ever. This predicament just represents the quandary we are in with Willie to a tee. Is it his personal right to eat what he pleases, when he pleases, in the amounts that he pleases? Or can we/they limit this? Please let the answer be the latter, for I don't want to go shopping ever for that XX-Large!