Family

Meet The Gallucci Family

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October 8, 2013

Bruno Gallucci plays rock-paper-scissors with his sons John, 8, left, and Joseph, 10, at their home in Burgettstown. Bruno, who has four sons, stays at home to care for them.
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By Mark Roth / Pittsburgh Post-Gazette

Jennifer Gallucci had been afraid to find out, but last month, she finally got her answer: Her 2-year-old son, Jude, does not show any signs of autism.

It was a small but important victory.

 

Jennifer Gallucci with her youngest son, 2-year-old Jude, who does not show any signs of autism.

Mrs. Gallucci and her husband, Bruno, who live in the tiny community of Burgettstown in Washington County, already have two sons with different forms of autism, as well as an older son with an ADHD diagnosis.

The Galluccis have four sons, two of whom have an Autism Spectrum diagnosis. They are awaiting definitive results on a third. (Video by Julia Rendleman; 10/7/2013).

Click on this link for video: http://bcove.me/op9t91zu

 

It’s not that their lives would have been shattered by having another child with autism, they said, but in a schedule already packed with therapy sessions, visiting aides and special diets, the conclusion by a psychologist at the Autism Center of Pittsburgh was a relief.

The examination showed that Jude has a speech delay but otherwise is “neurologically typical,” Mrs. Gallucci said. The psychologist “said he didn’t see anything indicating autism, and I said, ‘I like that. Let’s go home.’ ”

Joseph Gallucci, 10, and brother John, 8, play soccer at their home in Burgettstown. Joseph is low-functioning autistic while John has Asperger's syndrome, described as a form of high-functioning autism.

Her son Joe, 10, has moderate autism, and only began to speak in full sentences this year. Her next youngest, 8-year-old John, has Asperger’s syndrome, a higher-functioning form of autism, and also has some problems with aggression.

Because of that history, it made sense for the Galluccis to enroll Jude at the University of Pittsburgh’s Infant Communication Lab, which is part of a national network of centers studying children who have an older sibling with autism.

In 2011, the Pitt center and several others published a study that showed that nearly 20 percent of those younger children ended up with autism themselves — far higher than the estimated 1.1 percent rate in the general population.

The study suggests that autism has a strong inherited component, but it doesn’t rule out the possibility that some families might have experienced a common environmental exposure.

Joe Gallucci, 10, stretches his arms above his head as he works on balance during a horse-riding therapy session at Horse 'N Soul in Washington County.

As with Jill Escher in California (see related story), Mrs. Gallucci’s mother took fertility drugs when she was pregnant with Jennifer. But whether that has anything to do with her children’s autism, or whether her grandfathers being coal miners might explain it, she doesn’t know.

“Now all of a sudden autism is snowballing, and what is it?” asked Mr. Gallucci, a plumber who is currently a stay-at-home dad. “Is it toxicity in everything nowadays? Is it vaccinations? Is it food, water? There are so many different variables it’s mind-boggling.”

Even if the driving force for the Gallucci family’s autism is genetic, scientists do not yet have the ability to pinpoint a specific set of genes that are at fault in most cases of the disorder. Scott Selleck, a geneticist at Penn State University, said there are many different forms of autism, and hundreds of genes have been implicated.

“One could make the argument that to talk about a single entity called autism is a bit of a misnomer,” he said. “It is quite likely that autism is a disorder that has 2,000 genes, so what do we call it now?”

The Galluccis see that variation within their own family.

Therapist Brian Danna with Behavioral Dynamics Inc. plays a learning card game with 10-year-old Joseph Galluci, left, and his brother John, 8. The game helps the boys, who are both on the autism spectrum, to improve their nonverbal communication.

After their oldest son, James, 13, was born, Mrs. Gallucci remembered how active and verbal he was. So when Joe was born three years later, her first impression was that in contrast to James, “Joe didn’t need constant attention and he hit all of his milestones except for his speech, and I just figured he was quiet. And after Jim talking so much I was happy he was quiet.”

In preschool, though, it was obvious Joe had behavior probleMrs. School officials recommended Mrs. Gallucci take him to Children’s Hospital of Pittsburgh of UPMC and “at that point I was angry, and I thought, ‘I’ll take him just to prove you’re wrong.’ ”

After testing Joe, Mrs. Gallucci said, “the doctor left the room, and she came back in and handed me a book and said, ‘Your child’s autistic,’ and that was it. I shut down right then. I had no idea what she was talking about. I don’t think I’d even seen ‘Rain Man’ [the 1988 film starring Dustin Hoffman as an autistic man] at that point.

“Then I cried about it for two to three months.”

Soon, her pain turned to anger again, and she vowed that “if you’re going to give my child a label, and he’s going to be stereotyped and looked down upon, then I’m going to make sure he’s going to get all the good things that come with it.”

That meant signing up for therapy appointments, special school programs and enrichment activities, a jam-packed life that only became more crowded after John was born in 2005 and eventually got his own autism diagnosis.

Unlike Joe, who still speaks haltingly and has just begun to read, John is articulate, high-energy and fascinated by computer games, especially his favorite, Minecraft. He also has behavior problems at school, Mrs. Gallucci said.

“He’s much better in school during structured time; during unstructured time is when I get the phone calls. John has done many, many things in school. John is the bully; he doesn’t get bullied. John has started food fights. John has thrown wet paper towels all over the bathrooMrs. John is very loud in the halls. Just mischievous stuff, but now it’s getting to be a big deal.”

The Galluccis found out a couple of years ago that John has a rare genetic duplication on part of his 17th chromosome, one that has been associated with intellectual delays and autism.

Both boys get in-home visits from therapeutic support staff, known as TSS aides, who spend time helping with daily activities, and from behavioral specialist consultant aides, who can help write treatment plans and go with them to doctors’ appointments, as well as from specialized therapists. Altogether, these visits, paid for by Medical Assistance, take up about 11 hours a week.

Joseph Gallucci, 10, lets out his energy by bouncing on a large rubber ball, something he does often. The bouncing is part of his self-stimulation routine, activity common in persons with autism.

The Galluccis also have enrolled both boys in numerous outside prograMrs. One of the best, she said, has been the equine therapy sessions Joe has participated in at Horses with Hope, a riding program for special needs children based in South Park and Washington, Pa.

“Within two months of starting there,” Mrs. Gallucci said, “Joe was flying through his occupational therapies. His balance increased, his throwing aim, everything just went through the roof. When he’s on the horse, he can be having a very bad week, but something about that horse walking calms him down and he’s good to go.”

Besides managing the family’s schedule, Mrs. Gallucci works at an office involved in land purchases for shale gas development. Mr. Gallucci, who recently went back to school for training in cybersecurity, is still looking for work.

What does the future hold?

“I want to see all four of my children with college-educated jobs, living in their own houses with their own wives and children and driving their own cars,” Mrs. Gallucci said without hesitation. “I’m pushing for that. The only one I worry about getting to that goal is Joe. Will he get there? I don’t know — but I’m hoping for that.

“Because eventually I’m going to die. Either Joe’s going to stand on his own two feet, or one of his brothers will have to help him, and what are their wives going to say? Are they going to want to deal with that? I don’t know.”

In the meantime, the Galluccis said, they make sure the boys are well cared for and not in the least hidden away.

“We don’t have a lot,” Bruno said, “but these kids are all fed very well, they play, they are in their community. Right now, we live for them.”

“We don’t have time to sit around and say ‘Oh, autism is so horrible’ and you should feel bad for me,” Mrs. Gallucci added. “I know a lot of people who do that, who sit and cry about how horrible everything is.

“OK, yeah, it’s bad — let’s move on from that.”

http://www.post-gazette.com/stories/news/health/one-family-four-children-two-forms-of-autism-706693/#ixzz2h8YVC0ki

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Clearly Some Don’t Get The Awareness Thing…And Never Will

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It had been a very good week off; a time to recharge, spend time together as a family and appreciate what that means: being together, re-connecting, and appreciate that times can change quickly and drastically.  The new pup has changed our sleep/wake patterns and we’re still getting used to that.  In a matter of months, Nick will be in college; hopefully he’ll have some kind of part-time job before then (LOL!), so our day-to-day family dynamic will definitely change.  Birthdays, concerts and baseball games are coming now that Spring has finally arrived.

I guess I tend to take for granted the support each of us has provided to each other; understanding what it’s like to be part of a family affected by Autism is one thing; it is quite another to walk in our shoes.  Just simple acts of empathy, and understanding the stress levels that Autism tends to put families under are tremendously helpful.  Actually learning about Autism (and other related developmental disabilities) and offering help when it seems to be needed are true gifts; to that end I am extremely proud of my older sons, who so often ‘step up’ for their little brother, and each other.  Imagine someone offering you a brief respite, a moment to sit and have a quick, undisturbed cup of coffee or offering to watch your special needs child for a few minutes is like manna from heaven.

Our vacation, as usual, came to an abrupt and jarring end after an Easter get-together.  The setting is a family gathering in the home of a young child who is (at least) developmentally delayed and likely a nonverbal autistic.  He is a whirlwind of activity and impulsivity.  My kids played with his siblings and other cousins, allowing his parents to tag-team without the distraction of worrying about their other kids.  While he does have quiet moments (he let me stroke his hair while he lay next to me on the sofa), these are usually short-lived, especially when it’s late in the day and he’s tired.  Then he jets off to another room, or activity, or just needs to get up and keep moving.

I was appalled to hear a relative say, “I know this sounds mean but can’t we strap him down to a chair?”  Let’s be clear here: this is not the first visit she’s had to her nephew’s home.  He wasn’t particularly agitated, certainly not violent.  Actually quite redirectable.  So after cocking my head askew and imperceptibly shaking my head, I (and others in the room) answered 1. how inappropriate that is, and 2. how futile it would be, reiterating how this boy had earned his nickname ‘Houdini’.

Then comes,  “couldn’t they put him in a room with nothing in it?” I bit my lip before answering, “this is his home, this is where he should feel at home.” 

I did not bother to go into awareness issues.  I did not bother to explain just how wrong those two questions were, on so many levels.  Autism and developmental disabilities have been part of our extended family landscape for over a decade.  Everyone was witness to how difficult family gatherings in homes and restaurants, were.  How much of a toll in terms of stress and anger and lack of support there was after we found out our son Mike was autistic.   After learning that our nephew was also developmentally delayed, I remember my sister-in-law telling my wife ‘now I know what you were going through’ (or something similarly empathetic).   Vindication? No.  Understanding, yes.

I can’t pummel people about the head repeatedly to change how they view Autism, and its alarming rise in the United States.  I can’t change people who don’t want to change.  I can’t change how people interact with their own family members.  I can’t make people advocate for a cause they don’t want to understand.  I don’t wish they knew what it would be like to raise a Autistic child, because that would be one more child who needs to be championed.  I can’t ever describe how it feels to see how my Autistic child makes small progressions, and how that has helped me appreciate his two older brothers that much more for their successes.  I can’t teach them how to be ‘other-centric’.

I can feel sorry for them, for they lack basic human kindness.  They can’t help it; they were born that way.

 

Thanks, Brother! A New Autism App: AutisMate

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BROTHERLY LOVE PROMPTS YOUNG ENTREPRENEUR’S AUTISM APP

When Jonathan Izak looks at AutisMate, he only wishes something similar had existed when his brother was younger.

The iPad app, which Izak and colleagues have spent the last 18 months creating, is designed for autistic children — kids like Izak’s brother.

Screen Shot 2013-01-27 at 6.49.44 PM

“I think it definitely would have helped him (with his) acquisition of language,” Izak said.

In recent years, the iPad has been a hotbed for apps designed to help those with autism and other special needs, so AutisMate will have plenty of company when it hits the App Store later this week.

Some apps, such as Proloquo2go, replicate a staple of the autism field — the sentence builder that kids can use to build sentences using symbols and basic concepts such as “I want.” Such devices have long existed as standalone machines that can cost thousands of dollars. Other autism apps mimic the kinds of flash cards that can be used to visually represent things that one has trouble verbalizing.

AutisMate aims to handle those kinds of functions, but doesn’t stop there. One of its key features is designed to help kids even before they are able to piece together sentences that explain their desires. The scene-builder module uses pictures of the child’s own settings, such as their bedroom, work room, living room and kitchen.

Support for GPS allows the child to see one set of rooms, for example, at home and another set of scenes when at school.

The scene builder can also incorporate a variety of licensed videos to help with other settings, such as visits to the dentist or barber shop, as well as to help educate on concepts such as how to make it clear when they need a break.

Click this link to view the video:  http://video.allthingsd.com/video/using-the-ipad-to-help-autistic-kids-learn/3D76C0B7-2EB7-473A-9C2C-FFAE818B299C

Another component breaks tasks up into different components and time frames, tying completing the activity to a reward, such as a cookie.

At $150, AutisMate is certainly pricier than the average app, but it’s in the same ballpark as Proloquo2go and other comprehensive software for those with special needs.

“It’s generally in the range of apps out there,” Izak said. That said, there are a range of other apps including free and low-cost apps for specific functions. There’s even an app,Autism Apps, that is a guide to other autism-related mobile apps.

screenshot5

Izak left his role at the University of Pennsylvania’s linguistics department to start work on AutisMate. Initially, he did the hands-on programming, but now he serves as CEO of the 10-person New York startup behind the app.

Eventually, Izak hopes to build his tiny company into a larger educational software firm.

“Really, the vision when I started this whole thing was pretty broad — to use modern technology to help those with a variety of special needs,” Izak said. “I started with autism because it was very close to home, and close to my heart.”

http://allthingsd.com/20130128/brotherly-love-prompts-young-entrepreneurs-autism-app/

Here’s To The Birthday Girl!

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AN ODE TO THE BIRTHDAY GIRL THROUGH THE EYES OF AUTISM

by Allison Ziering Walmark, via SheKnows.com

Ethan and Eliza Walmark

It can’t be easy being the sibling of a child with autism. But this little 6-year-old girl not only copes with the situation, she’s also a tremendous source of support. She’s the light of her brother’s life and for that, he’s so very thankful.

My Sister, My Hero

My children are 16 months apart. With Ethan, our firstborn, we tried — and had fun trying, darn it — for five months before we hit the jackpot. (You might want to steer clear of room 901 at the CuisinArt Resort in Anguilla.)

When Ethan was 6 months old, our daughter Eliza was conceived, literally on my 40th birthday. (Tacky and trite, yet entirely true.) Still nursing Ethan and with just one newly returned monthly cycle under my belt (figuratively, not literally), I was convinced — and, more importantly, convinced my husband — that there was no way “we” could get pregnant so quickly. Famous last words.

The perfect present

My pregnancy was confirmed on Mother’s Day of all times. Who knew a pregnancy test would be the perfect present? At that time of my second pregnancy, Ethan’s development was right on target, and yet, I cried, feeling guilty, that somehow a new baby would short-change the unspoken “Mommy and Ethan alone-time” contract I had with my son.

The birthday girl

Ethan and Eliza Walmark

Eliza turned 6 on January 23 (1-2-3). Ethan, as always, was by her side and sang and played “Somewhere Over the Rainbow” in her honor. While Ethan has full speech — and a plethora of four-letter words thanks to Eminem and Prince — he has one more gift he wants to give his sister, which as his mother, I have taken the liberty to elucidate, as he’s too busy composing his next big symphony. (As it happens, he’s entitled it “Penis Poop.” Sigh.)

A letter from Ethan

For my darling sister, on the occasion of her 6th birthday,

You saved me. Literally, you saved me. The day Mommy and Daddy brought you home from the hospital is the day I completely shut down. In essence, your arrival forced them to realize my development wasn’t where it should be, and they called Early Intervention services. Without you, who knows if they would have stopped listening to everyone who said I was “just being a boy, and boys develop at a slower pace.” (More famous last words.)

Eliza and Ethan Walmark

You might not know it, but from day one, you have been my advocate, my protector, my teacher, my rescuer, my hero. My baby sister by birth order… a giant presence in my world.

We have two different sets of strengths: I am more musical, you are more athletic. I like computers, you like books. I like pirates and soldiers, you like princesses and Barbie. We don’t have a conventional relationship. Yet together, we are one very powerful force. We very much complete each other. Yin and yang. We are forever a team. We are The E-Team.

Sometimes I know you resent the attention that my music and autism engender, and I want you to know that I understand. I hear you tell Mommy and Daddy that you want to be on television… that you want to be interviewed for the newspaper… that you want to be on YouTube. Eliza, you don’t need to be on TV for everyone to see how talented, special and unique you are. You are already a star. You are my star. You are Mommy and Daddy’s star, too.

You are beautiful, Eliza, and not just because you have blonde curly Shirley Temple hair and blue eyes that make people stop in their tracks. That’s just your outside. Your true beauty is what’s inside, for it’s your heart and mind that make everyone you meet fall in love with you.

“You are one of those rare people lit from within.”

You are kind, thoughtful and wise well beyond your years. You are one of those rare people lit from within. You are the first to help a friend who is hurt; with a friendly smile and a kind word, you soothe their physical or emotional pain. You are quick to forgive a slight. Rather than receive material birthday gifts from your friends, you asked that they bring in one grocery bag of non-perishable food items so that you might donate them to the local pantry to help the less fortunate. (Come to think of it, are you sure we share the same DNA?)

When your friends ask why I am “different,” you try to educate them and sweetly say, “My brother has autism and sometimes his brain gets confused.” It is you, Eliza, more than any other person in this world, who has helped make me more typical. Who has helped make me more present in this world. Who has made me want to engage with others. Who has given me a sense of self, a sense of place and a sense of humor. You make the real world look so fun and inviting, that you help lead me out of my mind’s darkness and into the light. I see that your world is a wonderful place, simply because you are in it, and that’s where I want to be, too.

Ethan and Eliza Walmark

Your patience knows no bounds. When I get angry, you take your hands and wrap them around my face and say, “It’s OK Ethan, you’ll be OK.” When I do something good, you wrap your hands around my face and say, “Great job, Ethan! I am so proud of you!” When I mispronounce a word or say something inappropriate, you wrap your hands around my face and say, “No, Ethan. Say it like this.” And, I love it all, because I know you want the best for me and your support comes from the heart. Hopefully you know how proud you make me, as evidenced by my front-row claps and cheers at your ballet and gymnastics recitals. When you dance to my piano music, you make my heart sing!

Your teachers are amazed at your depth of empathy and they tell Mommy and Daddy all the time. One day, your teacher asked your class, “What are you thankful for?” Many kids mentioned a television show or pet. You answered, “My brother.” On more than one occasion, you have left certain extra-curricular classes in tears, because while you got a sticker, the teacher didn’t have an extra sticker that you could give to me at home.

Sometimes, I do feel guilty that I’m not the average, run-of-the-mill “typical” brother. But, it comforts me to know that you will always have friends like Lulu and Raya and CiCi and Marin, sisters-in-spirit, with whom you share “brothers with differences.” Rest assured that all us “brothers with differences” love our sisters just as much as you love us. We just have different ways of expressing our love.

While I know a birthday is traditionally a time to receive gifts, you should know that Mommy and Daddy also gave me a gift. That gift arrived six years ago — and every day since — and that gift is you. Having you as my sister is truly the greatest gift — and the greatest therapy — of all. I love you, Eliza!

Your loving brother,

Ethan Walmark

P.S. My room is still off limits to girls (except Mommy), so keep out.

http://www.sheknows.com/parenting/articles/983423/brother-with-autism-honors-sisters-birthday

Love And Marriage…The Bonds Of Special Needs Couples Keeping It Together

Posted on Updated on

Making It Last: AUTISM STRAINS YET STRENGTHENS A MARRIAGE 

by Stephen Petrow and The N.Y. Times

Nancy Clarke and Jay Petrow on their wedding day in 1987 in Southampton, N.Y.

Last summer, Nancy Clarke, 54, and Jay Petrow, 53, celebrated their silver wedding anniversary with family members in the backyard of their Westport, Conn., home. As Jay’s brother, I was best man at their 1987 wedding at our parents’ house in Southampton, L.I., and since then have watched as he and Nancy have taken on an extraordinary challenge — raising an autistic and seriously disabled son, William, who is now 19.

For two decades Jay worked “10 to 10” as a magazine art director, and then five years ago decided to make a new beginning, starting a landscape design company. Nancy, a Princeton graduate and former Wall Street trader, became a stay-at-home mom after William’s birth. They also have a daughter, Anna, who’s 15. Following is a condensed and edited version of our conversation about their marriage.

Tell me about the first kiss.

Nancy: We spent a weekend together with 10 other friends, which was the first time we met. I thought Jay was different — more approachable, someone I could be friends with. The ride back to the city took eight hours and it would have been much easier for Jay to drop me off first — I just thought he was being sweet by making me the last. As I was about to get out of the car I leaned across to give him a kiss on the cheek, but somehow the corner of my lip hit the corner of his lip and I got a jolt. It was like “Whoa!” and all of a sudden the weekend took on a different meaning.

Jay: She still tries to re-enact that kiss every time. There was definitely electricity.

A year and a half later, Jay proposed. How did that come about?

Nancy: I had been getting a little impatient and I asked him if it’s appropriate for women to ask men to marry them. He said, “Maybe, but I wouldn’t do that if I were you.” So I just let go of it.

Jay: I told her: “When I’m ready to get married, I’ll ask you. I don’t want you to ask me.”

Nancy: The night before my 29th birthday we went out to the River Café [in Brooklyn] and had a nice dinner. Afterward he got down on his knee and proposed. I was so stunned that I burst out crying.

Jay: I decided I didn’t want to live without her.

Not long after, you both quit your jobs. Were you crazy?

Nancy: We had been married for about three years when we decided to take a trip around the world — 20 countries in 14 months. This was an adventure I had always dreamed about, but I was so serious, making money, on “track.” Jay bumped me off the track.

Jay: We really wanted to see the world before the complexities and limitations of life engulf you, to step out of the normal routine of working hard, retiring and dying.

Eighteen months after you returned, William was born. Things didn’t work out according to plan, did they?

Nancy: From the start everything was so hard with William. He didn’t latch on. He didn’t sleep. I’d held a lot of babies before, but it was so hard for me to hold my own; he just didn’t koala into my own body. And then he started his head banging, out of frustration because he really couldn’t communicate at all. Sometimes at home, other times in public.

Jay: You could just hear his head hitting the wall and the floor so that —

Nancy: — it created swelling and bruising. I couldn’t bear to watch it and I couldn’t stop him from doing it. I felt humiliated and like a failure.

Jay: Just after he turned 2, our neurologist told us he wasn’t “right” and likely never would be, that we had a big job ahead of us. I’m the kind of person who usually thinks things will work out, but now I was devastated. And I certainly didn’t understand all the stresses it would put on our marriage. William always demanded so much time and attention that it was hard to find balance and passion with each other.

Nancy: I remember leaving the neurologist’s office on the Upper East Side after he had given us the news, pushing William in the stroller and just sobbing. My older sister Susan was with me and she kept saying, “It’s going to be O.K.,” and I told her, “No, it’s not going to be O.K. This can’t be fixed.”

That was a long time ago. What’s William like now?

Jay: Every night he wets himself, sometimes two or three times a night. He’s 19 and man-size now. He also continues tantrums. Three years ago we had to call the local police because he got so angry and started throwing furniture around and broke the glass on the front door.

Nancy: Last night William unplugged all the wires to the Wii, VCR, stereo and DVD player that take hours to connect.

Jay: It’s unrelenting when he becomes manic and just keeps coming at you. “Do you want to play Wii?,” sticking the remote in your face. “Where’s the train? I want the train.”

Jay Petrow and Nancy Clarke, 25 challenging but rewarding years later.

Nancy: I could see Jay was beside himself so I jumped in. Now when we’re in the midst of a terrible situation like this, I know that it’s going to be O.K. because we have each other.

Was there a time when you didn’t think it would be O.K. between the two of you?

Jay: I never wanted to get divorced, but the stresses got to be too much. I felt like I couldn’t stay in our situation. Part of it was William and part of it was how stressed out Nancy was.

Nancy: I remember when Jay said: “Maybe we should consider a divorce. It just hurts so bad. I’m in pain.” He also said: “If I were going to war I would want you to be in the trench next to me, but we’re not soldiers, you’re my wife.”

How did you get past those tough times?

Jay: We try not to think about what our lives could have been — what we’re missing out on. Rather we focus on what we have, especially each other. That’s really helped bring us together. We developed the ability to communicate about these issues, which really helps. So, too, does a sense of humor.

Nancy: I had to learn about balance, not a forte of mine, and that my singlemindedness about helping William had costs associated with it. That somehow, in spite of everything, we had to operate as a family, with everyone’s needs taken together. This was and is still very difficult to manage.

Anna was born four years after William. How did you have the courage to have a second child?

Jay: That was probably one of our hardest decisions because autism does have a genetic component. We were scared that we’d have another child with special needs, and that would have been pretty devastating.

Nancy: Brave and stupid are flip sides of each other. With Anna, I realized what a leap of faith it is to have a baby.

And how did she turn out?

Jay: She did have special needs — she was in the “gifted” program during elementary school.

I know William brings you joy too, I’ve seen it.

Jay: William is usually the life of the party — at weddings and bat mitzvahs — he loves to dance and often “gets down” with the bride. He’s got certain music that he loves to sing to — Wilson Pickett, Tom Petty and David Byrne. He croons like Frank Sinatra, has the passion of Gladys Knight, is so full of life and joyful that it just makes me happy and proud that he’s my son.

I know you’ve been remodeling the house you’ve lived in for nearly 20 years. Is that a metaphor for your relationship?

Jay: No, not at all. I pushed for the house remodel after Nancy’s sister, Susan, died from pancreatic cancer two years ago. She was only 54. I said to Nance: “We might as well do it now because we could be dead tomorrow.”

Nancy: Susan’s illness was really life-changing for us. Before that, it had been very difficult for me to leave William. But when she was diagnosed I knew I had to be with her. I looked at Jay and said, “I need to go.” He said, “I know.” She died four months later, and that time together was the biggest gift anyone could ever give me. My Aunt Mary always used to say, “Oh Jay, that’s my angel.”

What exactly did she mean, Nancy?

Nancy: He’s made of good stuff. He’s just always completely there for me.

http://www.nytimes.com/2013/01/04/booming/autism-strains-yet-strengthens-a-marriage.html?pagewanted=1

Sandy Left But We’re Still Here

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It has been a difficult week to say the least.  Hurricane Sandy brought unparalleled devastation to this area, unlike anything seen in generations.  My patients, those state residents with MR and other developmental disabilities, were temporarily inconvenienced as they were relocated to safer, though unfamiliar, locales.  For folks used to a certain routine and schedule, there is always the fear that change will affect them adversely; bringing about unwanted behaviors that have been kept in check by familiarity and reinforcement.

We too were inconvenienced by Sandy; we still don’t have electricity, but listening to the radio to hear tales of devastation and despair have reminded us how very fortunate we truly are: we have our health, our family, our home and our neighborhood, all of which are intact.  Last year during Hurricane Irene we were without power for 8-9 days, helped during that time as well as this one by being able to use a generator lent by my brother-in-law.  It keeps our fridge cold enough to keep food, and powers the microwave and coffee maker when we need it, as well as a lamp, and as of yesterday, our internet connection which supplies our phone line too.  Luckily we never lost our hot water, so the luxury of a hot shower also never left us.  We had no physical damage to our house, unlike the property behind us whose toppled tree landed on the electrical lines that feed our section of neighborhood.

The one thing that this hurricane has done is that it has forced me and my family to do things not internet-connected.  We have read, listened to the radio, played music, played board games, and in general used our imagination to flex our minds and our bodies.  My older sons hung out together, played football with friends, and generally have improved their tolerance of each other’s teenaged existences (LOL).

Mike generally would prefer to continue without the burden of going to school. But he knows this is an emergency, and school will likely start again on Wednesday.  Mike has taken this situation to expand on his vision of expanding the various theme parks of Orlando by drawing up plans of new rides, attractions and 3-D experiences.  It’s his contention that Disney, Universal Studios and Seaworld are woefully lacking in rides with themes that showcase sharks, killer whales, crocodiles, and of course dinosaurs.  He is in the process of drawing up such rides and wants to mail his ideas to the powers of said theme parks.  He has enough drawings to fill a 2 inch thick binder; in all fairness he came up with this development plan well before Hurricane Sandy hit.  His teacher, who called last night to check in on him and us, had full knowledge of these plans, so clearly he was devising during school hours as well.

I have also discovered that Mike is a big fan of so-called oldies music; probably more than he likes rock music.  I just find it amazing that he can differentiate between 50’s, 60’s, 70’s and 80’s music from today’s pop music; granted the music is in fact good as compared to current music which is decidedly hit or miss.  He doesn’t flinch if someone sings along to  a girl-group or ‘wall-of-sound’ group like the Supremes, but fusses mightily at the whisper of a Carly Rae Jepsen song playing in another room.  Thank you, Mr. Music Teacher.

So life goes on, slowly and with limited juice, but like the Rabbit and the Hare, ‘slow and steady wins the race’.  We are blessed to be only inconvenienced; blessed even more so that we are intact.

“Falling” Off Broadway: Autism At The Minetta Lane Theater

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JULIA MURNEY IS A STANDOUT IN AUTISM DRAMA “FALLING”

Julia Murney Is a Standout in Autism Drama 'Falling'

Josh’s favorite activity is tilting open a cardboard box full of white feathers that’s perched on a wall shelf just above his head and letting the contents fall on his face. It is among the few calm moments in his day. Josh is 18 years old, overweight, autistic, and aggressive in “Falling,” Deanna Jent’s fascinating play being given a stellar production at the Minetta Lane Theatre.

“Falling” focuses on Josh’s effect on his family. The toll seems heaviest on his mother, Tami (Julia Murney), who with Josh’s father, Bill (Daniel Pearce), has developed an endless series of routines, rituals, and little games to distract or entertain her son to get him through the day and keep him from attacking people. Daniel Everidge gives a brave and persuasive performance as Josh, portraying a big, awkward baby who grunts and groans and speaks in sentences rarely longer than two or three words. He also gets easily frustrated and upset, whether because of the new cane that his grandmother (Celia Howard) brings with her on a visit or the barking stray dog that his resentful younger sister, Lisa (Jacey Powers), would like the family to adopt. When Josh gets sufficiently upset he has an “episode,” lunging at people and knocking them down or pulling their hair while biting his own hand. The person most often attacked is his mother.

Jent strives to give dramatic shape to “Falling.” Grammy Sue, a Bible toter and quoter who doesn’t fully understand the challenges of raising Josh, is paying a rare visit to the household, which allows the opportunity for some exposition and semi-cathartic outbursts from family members. There is also a plot twist near the end that works better thematically than dramatically. But the play doesn’t really go anywhere. That’s all right; it doesn’t have to. Its strength is in the unsentimental, precisely observed scenes that bring home what it is like to care for a loved one with special needs. (Jent has an autistic son.)

What makes this work so well is the standout performance by Julia Murney, whose encounters with Everidge invest the play with an authentic and harrowing feel. Murney plays a woman too busy to fall apart but too stressed out not to express the strain in myriad ways. Watch her face when Tami writhes her way out from under the deadly grip of her son. Director Lori Adams wisely guides the five-member cast to emphasize the everydayness of their interactions. Pearce gives Bill a forced cheerfulness that masks a fatigue tinged with desperation. Howard plays Grammy Sue’s shock at the goings-on with restraint.

Adams, who helmed the original production of “Falling” at the Mustard Seed Theater in St. Louis, smartly has brought along set designer John Stark, whose realistic interior subtly helps to establish the obstacle course that is the characters’ lives, and lighting designer Julie Mack, who guides us from harsh reality to interludes of escape. Their work anchors this newly cast production of a play that makes clear how little support exists for families such as Josh’s.

Presented by Terry Schnuck, James and Catherine Berges, Crystal Beuerlein, and Michael and Noémi Neidorff at the Minetta Lane Theatre, 18 Minetta Lane, NYC. Opened Oct. 15 for an open run. (800) 982-2787 or www.ticketmaster.com.

http://www.backstage.com/review/ny-theater/off-broadway/julia-murney-autism-falling-deanna-jent/