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

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

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!

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.

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....

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!

That Holland Poem: Raising A Son With Special Needs

We all know it. That dreaded Holland Poem: http://www.child-autism-parent-cafe.com/welcome-to-holland.html  I always cringed when I read it. My husband liked it. After a while, I sort of forgot about it. But I definitely remember the message of the poem.  After all, Willie has taught me many valuable lessons, introduced me to wonderful people, and of course forced me to never sweat the small stuff. So Holland, as a destination for this life, is actually OK.

The other day we were driving home from yet another visit to yet another potential new program for Willie. The process is exhausting, requiring the patience of a saint, which Willie has taught me too. This program seems surprisingly promising. Kernels of hope are beginning to banish the deep dread and despair that has taken over since Willie has basically "failed our" of his current program of the past 2 1/2 years.

And then my husband says: "That trip to Holland is never over.  It just keeps going."  What he meant was that we thought we had learned all the lessons, faced all the challenges, and that Willie was just fine by the time he graduated form high school at 21. Instead, we have come to find out the challenges are just as fierce post high school, just different. The Holland we are living in now has all new rules, new expectations, and a very different language.

The author of the Holland Poem, Emily Kingsley, wrote a sequel, and perhaps this is what she meant. For some reason, and maybe it's just us, we thought we had arrived once Willie was an official adult. As it turns out, he keeps growing and changing and certainly needing new things.  And we are still his advocates and interpreters of the world.  The new rules in our new Holland are screaming loud and clear.  We have finally interpreted that language and we are listening.

 Still despise that poem though.

Siblings: Raising A Son With Special Needs

I used to lay awake at night worrying about Willie's brothers and sister. What had he done to them? How had his presence and neediness and tantrums and basic existence shaped them, changed them, and even traumatized them? I read every book about the topic of raising siblings with a Special Need's brother. We participated in SibShops, a therapy support group. We talked about the elephant in the room endlessly. And then Willie moved out and they grew up and I forgot.

Until last night. I went to see this movie, a Documentary, called My Hero Brother:   http://www.myherobrother.org/ It was a loud reminder that when you have a brother with a disability, it does in fact change you. The movie was so authentic, as it didn't shy away from the harsh realities of this situation.  At one point, one of the sisters said that being born after her Down Syndrome brother was like being raised in a black hole.  She openly discussed how she used to hate him. It was this same sister who volunteered to hike the Himalayan Mountain Range with her brother with a group of others just like her. The love portrayed from this sister to her brother was breathtaking. The hope this movie gives, as is the Director's intention, is a gift that definitely keeps on giving. 

Another theme the Director Yonathan Nir, talked about after the movie was how isolated siblings of those with disabilities are. Yonathan says it is often a self-selection process. I noticed that phenomena once with one of my kids.  None of his sleep-away camp friends knew he had a Special Need's brother for several years. He made that choice. He went to this overnight camp to lose that part of himself.  I remember being dumbfounded by this. But thing is in the movie, these siblings found others who in fact also had a sib with a disability. Now they could share that bond with a whole group of peers. Their entire identities could be revealed.

Check out the trailer to My Hero Brother: https://www.youtube.com/watch?v=vwrbgVrrSSU. And go see the movie. Share it with your kids. Share it with your Special Need's communities. Share it with with your schools. It is a gift you can give all your children. For after the trek to those mountains in India, each of these brothers and sisters, one with a disability and one with not, grew closer then they had ever imagined possible. That is HOPE wrapped up in a box, meticulously gift wrapped, and topped with the sparkliest bow imaginable.