"The Wolf of Wall Street" - What Does It Have To Do With Super Joe?

Before a child is ever able to speak and express himself (this is called "expressive language"), he is able to understand what is being said to him or around him (this is called "receptive language"). 

This is a point of view we have emphasized since Joey was starting to roll over. As a family, we decided that we would speak to Joey as if he understood every single word we said and that we would hold him to the same expectations for behavior as we do our older son. 

The problem is when you have a child who is non-verbal or who has delayed language skills it is hard to help everyone around that child understand that although the child may not be able to verbally express his or her feelings, the child does understand and comprehend far more than any of us know. 

We have had to part ways from two different therapists who were treating Joey for this very reason. One therapist called herself "retarded" in front of Joey and I during a therapy session and when I asked to please not use that word in front of Joey or any of her clients, she denied ever saying it. A different therapist said that Downs kids who were stubborn might be cute when they were 2 or 3-years-old, but not when they are 8-years-old. It was such a bizarre statement and it was only her, Joey and I in the treatment room. We also parted ways for the very reason that we believe that Joey's "receptive language" exceeds his "expressive language" and it is possible that it might always. 

Part of the challenge of having Down syndrome is that it can take some individuals a second or two longer to process a conversation and respond. In a world where we all (myself included!) rush through our days and our conversations, that extra processing time can cause frustration and communication difficulties.

For Joey's sake, we continue to try and emphasize to everyone we know and interact with that while he may not have a quick answer to your question or comment, he more than likely understands the comment and if given enough time to process it he may have his own response. For us, we struggle to bite our tongues and not fill in all the blanks for him.  For us, we struggle with giving him the time and energy he needs to come up with his own answers.

Did you ever know someone in school who was very quiet and who did not talk or participate in class? Some might say that the person was "painfully shy" or "socially awkward" in group settings. Maybe you were the quiet one. I know I was when we moved to a new town in 3rd and then again in 6th grade. Did you ever notice how the quiet person kind of just disappeared? How they were sometimes marginalized because they did not offer anything to the discussion? Sometimes being quiet can be equal to being forgotten about.  

For Joey and for others, being quiet or taking time to respond does not mean he is not interested or shy, it just might mean he needs a little bit longer to figure out his response. Being quiet or having difficulty communicating also does not mean that the person can not hear or comprehend what is being said. That is the real danger I fear. That others will think that because Joey doesn't immediately respond, people will think he doesn't understand.

What we are finding out and what we are celebrating is just how much Joey DOES understand and just how much he CAN say!!!

His Godmother observed him over Christmas Break and she was especially pleased by his progress and by his ability to listen to and follow directions as well as respond to conversations around him. It's been breathtaking to witness.

He now knows at least 60-70 signs and he uses about 100 different words. He is also able to mimic almost any word we say to him! Slowly, but surely Joey is showing us just how much he does know about his world and surroundings. He says new words on a daily basis as opposed to when it used to be only every few months that we would hear a new word from him.

One of the most exciting words he now says is, "Walk!" He will come and get my hands and say "walk"and then he has me hold his hands as we walk together. It's only mid-January, but 2014 has been incredible so far.

So, to the question of what does "The Wolf of Wall Street" have to do with Super Joe?

Fortunately, the actual story as shown through the eyes of Martin Scorsese has nothing to do with Joey. 

Unfortunately, the way the story is told has far too much with how society thinks it is okay to marginalize and mock individuals like Joey who happen to have developmental disabilities.

While Hollywood and those who award the actors and directors in it ("The Wolf of Wall Street" has received 5 Oscar nominations) seems unwilling to ever stop using the word "retarded" or to stop mocking individuals with disabilities, it would at least be helpful to provide moviegoers with a warning in the rating system. Perhaps an "MD" rating that means a movie Mocks Disabilities would work. At least then the consumers who have a disability, have a child with a disability or know someone with a disability would have the choice to not see the film.

The film is based on the life of New York stockbroker Jordan Belfort who was convicted of fraud and spent 22 months in prison. Leonardo DiCaprio stars as Belfort and Jonah Hill plays his sleazy minion, Donnie Azoff. 

Beyond the excessive images of drug abuse, the over 500 times the f-word is used, the frontal nudity and orgy scenes are two scenes that I found far more distasteful and devastating than any of the other 3 hours of debauchery in this movie.

We went to the movie with another couple and after the movie they asked me if we wanted to leave after the scene using the R-word. While I always want to leave movies that use the R-word, I now take it as an opportunity to tell others about the movie and to help give them the option to choose to not to waste their money on the movie if they so choose. 

So with that spirit in mind, we stayed despite the following sickening scene that literally caused our little row of the four of us to go into an awkward and palpable silence because we each knew that if this character had a child like our own son, he would have disregarded him as less than a human.

In this scene Belfort asks Azoff  about the rumors that Azoff is married to his first cousin. Azoff confirms that he did indeed marry his first cousin basically because she was hot. He then goes on to ask Azoff if his kids are okay. And then Azoff  says that yes, his kids are fine and they aren't like "retarded" or anything. Besides, if they were "retarded" he would "drive north" and let the kid "loose in the woods." That he would say to them, "You're free, you're free now!" Azoff then goes on to say that if their kids were actually "retarded" he would put them in an institution for life.

As Michelle "Izzy" Galgana writes in "Why The Wolf of Wall Street Is A Horror Movie", "Just let that sink in a little."

In another scene, the Belfort character consumes so many expired Quaaludes that he has to crawl back to his Lamborghini in what he recalls is a "cerebral palsy phase" as he narrates the scene. It was as shocking a comparison as it was disgusting and out of place. I know the age-old arguments that others will make- freedom of speech, artistic license, it's just words, it's just a movie and on and on.... to those  arguments I say the following:

The Arc and United Cerebral Palsy released the following statement in response to the movie:

“The Wolf of Wall Street is getting a lot of attention for how it offends audiences on many levels, but one aspect that hasn’t been discussed is its use of the r-word and its unacceptable mockery of people with cerebral palsy.  Hollywood just doesn’t seem to get it.  More than five years after people with disabilities protested at theaters across the country against Tropic Thunder, a film which included a highly offensive portrayal of people with intellectual disabilities, the industry is still using language and jokes that hurt audience members and don’t add any value to the artistic intent or point the film is trying to make,” said Peter Berns, CEO of The Arc. “Among moviegoers who have paid to see The Wolf of Wall Street in recent weeks are people with disabilities, their parents, siblings, and friends.  It’s time for Hollywood to wake up and see that their customers deserve better.”

“The Wolf of Wall Street’s gratuitous use of an offensive term for people with disabilities, as well as its depiction of cerebral palsy, is outrageous. For more than 60 years, UCP has been working to ensure that people with cerebral palsy and other disabilities can live their lives without limits—including equality, inclusion and respect in our society—but it is very clear that our fight is far from over,” said Stephen Bennett, President and CEO of UCP.“While we understand that the film’s content is deliberately distasteful and excessive, it does not excuse it. It is astonishing that the film’s producers, director and actors deemed this kind of language and portrayal to be acceptable—they can do better, and we urge them to.

They are so very right. We deserve better movies. As consumers, as humans, as parents, as individuals, as advocates, we deserve better. People with disabilities DO deserve equality, inclusion and respect in our society and the Arc and UCP is right- our fight is far from over.

The only thing I disagree with in their statement is the final line. In it they say they urge film producers, directors and actors to do better. I say we demand they do better. Our kids, our family members, our friends and our communities deserve it.

Will Joey Ever Walk? A Christmas Prayer

I have had our Christmas cards for over two weeks, but every time I sit down to try and write this year's Christmas letter I find myself too sad, too conflicted and too confused to talk about the past year. The problem is that each year I start with last year's Christmas card and then write about the changes the next year has brought. 

In 2011 Joey was not crawling and had just started sitting up at 18 months. 

In 2012 Joey had finally started Army crawling and I wrote about all of our high hopes that 2013 was going to be the big year that he started walking and that we would all go to Disney World to celebrate him being a new walker.

We knew that Joey having Down syndrome would mean that he might face additional challenges in his life. Unfortunately, it sometimes feels like an inordinate amount of those challenges are occurring in the first 3 years of his life. The surgeries, the eating issues, the eye issues, the verbal issues and the gross and fine motor issues. At times it can honestly seem like too much. At times it just seems unfair. And not unfair to us. Unfair to Joe. There are days I just say, "Why, God? Why, Joe? Why can't he just get a break? Why can't something be easy for him for once?" 

And then I have to pause and take a deep breath and remember that there are some things that do come to Joey easily. Like his beautiful smile and two perfect dimples. Like his incredible interpersonal skills and determination. Like his easy laugh and his super strong and warm hugs. To get a hug from Joey is to feel the arms of an angel around your neck.

I wouldn't be human if I didn't tell you that part of it is my problem. I want Joey to start walking and standing up on his own because HE IS HEAVY. And long. And three and a half-years-old. He's almost 33 inches long and weighs about 34 pounds. I'm only 64 inches tall, so when I hold him he is almost half of my height. What I am trying to do is to enjoy this time, live in the moment and enjoy that he still needs me and that we do spend so much precious time with him in my arms. That is what I try to focus on- enjoying the moment - our moment - for what it is. It's just that the in and out of the car 5-6 times a day and the up and down of lifting him up into chairs and up and down stairs can sometimes cause me to be quite weary. It just does. 

The other part is the yearning part of me that wants and longs for Joey to run alongside his big brother. The part of me that wants and longs for Joey to be able to keep up with his preschool classmates and friends. The part of me that wants and longs for Joey to have the independence he seeks every day. 

This part is hard. He has an agenda and he has places he wants to go and adventures he wants to have. He is such a 3-year-old. He wants what he wants when he wants it and how he wants it. His frustration has started reaching new levels. He has been acting out. Sometimes it's hitting. Sometimes it's yelling. For the most part it is typical 3-year-old behavior, but we also know he has extra frustration due to his verbal and motor delays. 

Will Joey ever walk? Yes. We know he will. And in the meantime we are doing everything we can to help him get there. He is now doing Horse Therapy and Swim Therapy alongside his regular PT, OT and private Speech therapy as well as the PT, OT and speech he receives at school. The Horse Therapy has been life-changing for Joey. His core strength is building. His confidence is building. He talks about Rufus the Horse all week long between his 30 minute sessions. When he is on Rufus he is like a new boy. He has no fear, but pure joy. For Rufus and the amazing friends at Victory Gallop we are so very grateful.

Since last year there IS progress. He has advanced from Army crawling to 4-point crawling (on his hands and knees). He has started pulling up to stand at spots where he can hold onto something. He can walk 10-20 feet if you hold his hands. This is progress. And this is what Tom always reminds me-- Joey always has made progress. He keeps moving forward. At times it can feel like the most painfully slow process ever, but it is always progress.

In the meantime, not once has Joey's older brother Tommy ever asked me what is "wrong" with Joey. He doesn't see anything wrong with Joey. Tommy doesn't care that Joey can't walk, yet. Tommy treats Joey just like any little brother. He wrestles with him. He pulls him down to the ground to roll around and play. They fight. They laugh. They hug. They hit. They are are magical all year around in the fierce love they have for each other. Every morning when Joey wakes up he says, "Brother." His name for Tommy. The only thing he will call Tommy- Brother. 

Tommy in turn spends his day trying to convince Joey to play with him. On the way home from school the other day he said, "Mom, everyone in my class loves Joey." 

I teared up. I swallowed and said, "That's so nice, Tommy. You know they love you too!"

It's a balance, but they don't seem to notice and that is all that matters to us.

Our hope and prayer for the next year is that perhaps he could go for an entire year without a single surgery or hospitalization. It seems that every surgery and every hospital stay has just pushed back his progress that much more and has caused him to have to work that much harder. 

Our Christmas Prayer for this year is that Super Joe will start walking in this journey beside us. As much as we love holding him in our arms every day, we pray for him that he achieves this incredible step forward.

What is your Christmas Prayer this year?

We hope it is answered this year.

Am I Thankful for Down Syndrome?

Am I thankful for Down syndrome? Every single day. Joey came into our world with a bang that has not stopped. And at the end of the day we are still in a state of amazement that he ever made it at all. Was I always thankful for Down syndrome. No. Not at all.

Photo by Nat.

Initially, we found out around 12 weeks into our pregnancy that Joey had fetal hydrops- fluid surrounding his body as well as a septated cystic hygroma that looked like a halo around his head that was also fluid.

We were told that probably due to a heart defect and a chromosomal variation (we no longer refer to Joe as a chromosomal abnormality) the fluid would continue to surround his body and brain and that in all likelihood, Joey would not survive the pregnancy. We were told not to expect the pregnancy to last past 20-24 weeks. 

We were told he had about a 1.9 or 2% chance of making it.

When we were told that news, Down syndrome was the last thing on our minds. The next week I underwent a chorionic villus sampling (CVS) testing to try to learn more about what might be causing Joey's complications. A few days after that testing, we were told over the phone by a geneticist in another town that our baby had Down syndrome.

Again, Down syndrome was not really on our minds. Instead, we were dealing with the idea that our baby boy would not survive. We were coping with these foreign and frightening medical terms like "septated cystic hygroma" and "fetal hydrops" and "congenital heart defect".

It wasn't your "typical" pregnancy. And by typical, I mean that most women who are pregnant don't see a psychologist on a weekly basis in addition to visiting the high risk fetal medicine OBGYN two to three times a week. That's not what I saw when I viewed my other friends' pregnancies. At times I was angry. Other times I was depressed. Sometimes I was envious. I would see other pregnant women and wonder why we had to be living through this hell in which our little baby was given virtually zero chance of surviving. 

I think that sometimes it takes going all the way to those very dark, dark places to realize what gratitude means. To understand how fortunate and blessed your life is. It is easy to get caught up in a day to day existence of going through the motions. But sometimes in our lives we have a journey that is so shocking or so stressful or so difficult that it sharpens our very views of the world. It's like when you are at the eye doctor and he keeps flipping the lenses asking which one you see more clearly through. Joey brought the most clarity I have ever known in my life. For that my gratitude is unending and eternal.

Photo by Nat.

Once we had made it past week 20, then week 24 and finally week 28-- that was when I really started having more faith that this little fighter might actually survive.

Around week 24 his congenital heart defect was confirmed and we were told that he would more than likely need open heart surgery.

It was after this point that I started to cope with Joey's diagnosis of Down syndrome. Cope, you ask? Yes, cope. 

The point of this blog is to raise awareness, to be a resource for other parents and to try and take away the fear that new parents might have when they find out their child has Down syndrome, but long before I could try to do my own advocating, I had to face my own fears and I had to learn to cope and ultimately accept Joey's diagnosis. 

My version of coping meant meeting with a therapist and discussing all the possibilities of this pregnancy and what it would mean to raise a child who would have special needs. My version of coping meant reading every single book and blog on Down syndrome that I could find. My version of coping meant grieving hard and deep for the better part of the pregnancy. My version of coping meant meeting some other parents and learning about their journeys. 

Photo by Nat.

Looking back, much of my journey coping and grieving about having a child who had Down syndrome seems so very selfish. Much of it seems like a waste of time, but it was a journey, a process, and it was my process. The part that feels so selfish is that so much of my worry centered around me- how would I take care of a child with special needs? How would I find the patience to handle a child who might move at a more leisurely pace? How would I feel about how society treats my child? How would I feel if someone made fun of my child? How would I feel if my child didn't fit in at school? How would I deal with all the unknowns? 

Many of my fears were fears for how Joey would survive in this cruel and sometimes dangerous world for people with disabilities, but so many were self-centered.

Joey riding Rufus at Victory Gallop.

Despite all of my preparation and despite all of my reading, I truly had no idea what Down syndrome was until I met our baby boy. I had no sense of just how "normal" Joey would be. I had no understanding of how much this little person would make us laugh. I had no idea how much he would bring our family together. I had no idea that we would all become his biggest cheerleaders. I had no idea that things like horseback riding would become one of the best parts of our week. I had no idea about the other families and children we would meet along the way. I had no idea about how much the world would open up and how much more empathy we would have towards all individuals with disabilities.

I had no idea how much clearer and sharper the important things in life would become. Or how much easier it would be to see and appreciate those things.

I had no idea that Down syndrome would end up not being something to mourn and lose faith and time over. I had no idea just how much Down syndrome would change all of our lives for the better.

For Down syndrome and for having a miraculous little boy named Joey, I am forever grateful.

Do you have something in your life that has helped you see the important things more clearly? Something to be eternally grateful for? I hope so. 

Photo by Nat.

Happy Thanksgiving 2013!