Ten Fun Things I Learned as the Parent of Autistic Boys

1. Laughter is very important. Yes, you can find your child’s faux pas funny. The trick is not to let them see, or hear, you laugh.

2. Pokemon is forever, and ever, and ever…. And so is  Star Wars, Star Trek, Bleach, Yugi-yoh…but not necessarily Tolkien.

3. On-line worldwide multi-player games never go away. They simply morph into new and different games. From World of Warcraft to Star Wars-Old Republic and back again.

4. They can play on parental feeling really really well.  My youngest son had his wisdom teeth out. He was not supposed to do any heavy lifting, exercise, or overexert himself in any way. But while he recuperated, I suddenly became “mommy,” again, instead of “( eye roll) mom.” He let me coddle him, indulge him, and bring him all his favorite foods. Honestly, I really enjoyed this trip down memory lane, especially since he really wasn’t in a bad way at all.

5. They steal your credit card because they think you are cheap when it comes to charitable giving.  My oldest son has always been a very charitable person. Well, one day my oldest decided that I had not given enough to a particular cause and took it upon himself to take my credit card and donate more money. Of course, he knew he did wrong. He went into my emails and deleted the receipts and letter from the charity. Little did he know that for credit cards there are bills and bank statements as well. He ended up having to reimburse me and forever had to earn “points” if he was going to earn back a video game or any of his card games ever again. It was an interesting life lesson that quite frankly got a chuckle out of every adult, especially the therapists and psychologists I told. What teenager steals a credit card to give to charity and not buy expensive kicks?! Mine, that’s who!

6. Yep, they get humor – my youngest son’s favorite number is 42, cue “The Hitchhiker’s Guide to the Galaxy”, his favorite book. The number 42 is the answer to life, the universe, and everything. His gym locker has to be number 42, and when you ask him a question that he just doesn’t want to answer he gives the answer as 42. 

7. They prank archaeologists of the future. Always ask before you get mad when they seem to be in destructo mode. Their rationale will floor you. Who knew that a piano bench was not for sitting and playing at the piano? 

8. My life is an episode of the Big Bang Theory. This speaks for itself.

9. They can and do act like typical teens. Don’t ever tell them to wear a jacket when it’s cold outside.

10. They become champions of fighting the wrongs of this world. My youngest son eventually got banned from Twitter for going after anti-Semites. He was rather inelegant about it, but then again, it’s hard to be respectful to haters of any kind.


Elise, an award-winning blogger, writes about the practical aspects of raising autistic children at her blog Raising Asperger’s Kids, http://practicalautism.com. She writes under the pen-name Elise Ronan, to protect her sons’ privacy, and has permission from them to tell their story.

Everything Elise writes about raising autistic children can be applied to any disability, invisible or even physical. There is information about creating your child’s support village, and practical information grouped by age. These direct pages can be found on the sidebar on her blog page. She is open to answering questions about her writings and helping other parents where she can. You can reach her at practicalautism@gmail.com.

Elise also writes a book review blog at Journaling on Paper, http://journalingonpaper.com.  She reviews different genres from memoirs, to spy thrillers, murder mysteries, space operas, historical fiction, and more. She also explores the use of language, and its effects.

Transitioning from Summer to School

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As we move towards the end of summer it is important that we create as smooth a transition into the new school year as possible for our children. For many children it is not just the change of schedule that causes concern, but it is getting them used to new teachers, new classrooms, new classmates, and as they get older, new academic requirements and even new school buildings.

This is not easy for the average student, never mind those students who have a disability. Parents and educators need to be aware of ways to help with the transition into a new classroom and what is expected of them as they move up each grade/year.

Here are some ideas that have helped us over the years with transitions from summer into the next school year. Remember all the suggestions can be altered to fit any child’s age, needs, or particular circumstances:

1. Write a social story. Social stories are individualized short stories that describe a social situation that a child (affected by autism) may encounter. Social stories are used to teach skills and social cues through precise and sequential information about everyday events that the child may encounter and find challenging. Social Stories can prevent anxiety and help a child navigate the start of the new school year and new social situations.

  • You could write a social story with the names of the new teacher (s), the school, the classroom, and other staff and how to greet each.
  • Write a social story about how starting a new school year will be exciting and they will meet many new friends.
  • Write about where the bathroom, cafeteria, gym etc. are and include the transition procedures between activities.

This works for older children as well as for those still in elementary. In fact, my younger son used to carry around his “social story bible” in middle school. It contained every social story that had been written for him, from how to find his locker, how to behave in class, to where the cafeteria was, where his quiet room was, and steps he had to take each time he entered a new class. He also decorated the front of the binder, which gave him ownership of the entire project. Every time he came into homeroom in the morning, the special education teacher (he was in a co-op class) would have him sit and read through all the social stories in his “bible.”

2. Make sure they visit the new teacher, classroom, tour the school to learn where everything is, learn where their lockers are (if there is a combination help them figure out how to open the locker). And if they are going to switch classrooms for subjects, make sure they visit all their classrooms and if possible say Hi to all their teachers.

If the school principal and vice principal are around, introduce your child and/or simply say hi to the people in the front office as well. I have found that simply having a rapport with the adults in the front office was very helpful for my children throughout the school year. A friendly face and smile from an adult always go a long way in making your child’s day better, easier, and allows them to feel welcome.

3. If they are also new to a classroom, create an opportunity for them to know at least one other student in the class ahead of time and set a play date up for them.

4. If they are in middle school or high school have a meeting with the guidance counselor and make certain all the teachers have copies of the child's IEP. 

5. Have a meeting with the new teacher(s) to make certain they understand what is in the IEP and discuss any questions or concerns. In some instances your child may also have a behavior plan (both of mine did throughout their education). Make certain the teachers all have copies and that they understand what the plan is when certain circumstances arise.

6. Take your child shopping for school supplies and new clothes if appropriate. Allow them to have a say in their folders, binders, and clothes.

7. Set up a calendar of events so the child can mark off the last two weeks (or days for younger children) of the summer. Try to make the end of the summer fun, but also a little boring so they will be happy to get back to school. (Yes, that is a mommy-trick, and obviously not exactly fair, but all is not fair in love, war, and parenting.)

8. This may be challenging, but see if they can meet their new bus driver and aide too. If your child is in kindergarten, or this is the first time they are riding the bus, see if the school has a special bus ride day for new children and make sure there is proper support for that day.

9. Have a special meal the night before school starts to celebrate a new school year. We always have Chinese food the night before a new semester. In fact, it is such a tradition in our house, that my oldest who just started a summer course, insisted on having Chinese food the night before his class was to start.

You can find more articles I have written on the practical aspects of school.

For younger children: http://www.practicalautism.com/2015/07/pracrtical-information-for-pre-k.html

For older children   http://www.practicalautism.com/2015/07/practical-information-for-adolescents.html


Elise, an award-winning blogger, writes about the practical aspects of raising autistic children at her blog Raising Asperger’s Kids, http://practicalautism.com. She writes under the pen-name Elise Ronan, to protect her sons’ privacy, and has permission from them to tell their story.

Everything Elise writes about raising autistic children can be applied to any disability, invisible or even physical. There is information about creating your child’s support village, and practical information grouped by age. These direct pages can be found on the sidebar on her blog page. She is open to answering questions about her writings and helping other parents where she can. You can reach her at practicalautism@gmail.com.

Elise also writes a book review blog at Journaling on Paper, http://journalingonpaper.com.  She reviews different genres from memoirs, to spy thrillers, murder mysteries, space operas, historical fiction, and more. She also explores the use of language, and its effects.

ADA: Past, Present, & Future Imperfect

The Americans with Disabilities Act (ADA) was signed into law on July 26, 1990, by President George H.W. Bush. The ADA is one of America's most comprehensive pieces of civil rights legislation that prohibits discrimination and guarantees that people with disabilities have the same opportunities as everyone else to participate in the mainstream of American life -- to enjoy employment opportunities, to purchase goods and services, and to participate in State and local government programs and services. Modeled after the Civil Rights Act of 1964, which prohibits discrimination on the basis of race, color, religion, sex, or national origin – and Section 504 of the Rehabilitation Act of 1973 -- the ADA is an "equal opportunity" law for people with disabilities.

To be protected by the ADA, one must have a disability, which is defined by the ADA as a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment. The ADA does not specifically name all of the impairments that are covered. www.ADA.gov


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Historically one of the most marginalized groups in history have been those with disabilities. Societies have deemed them either unworthy of life or have seen them as God’s punishment for bad deeds. Disability has almost always been misunderstood. It was the communal fear of persons who were different. And as communities tend to do, when something is out of the ordinary—it is identified or characterized as evil.

Those who were different—those who lived with physical or mental disabilities—were relegated to the margins of society. At times they were denounced as witches, or thought to be in league with Satan. Invariably, they were merely persons living with a physical difference or some form of mental health issue. These ignorant meanderings led them to be ostracized by the mainstream. They were made to live on the fringes of society.

As society developed and modernized, we became more educated. At some point society thought it had become enlightened by no longer denouncing the disabled as witches or maleficent beings, and instead simply warehousing them. Sadly here people with disabilities were mostly neglected, abused, and ill-used. The horror that was Willowbrook, came to light in 1965 when Senator Robert Kennedy paid an unannounced visit to this institution that housed 6,200 residents in a place meant for 4000. The dehumanizing and abusive conditions drew national attention and became a key moment in disability rights history through a class action lawsuit that won increased protections for people with developmental disabilities.

Luckily, the United States was going through a societal upheaval in the late 60s through the 70s and 80s and the Civil Rights movement. Fortunately, some of the more outspoken disability advocates just happened to be disabled WW2 veterans who graced the halls of congress. They, along with the national disability movements, worked tirelessly to create the Americans with Disabilities Act (ADA).

What the ADA does is acknowledge that those who live with disabilities are viable and productive members of society. They are ENTITLED to be a part of our society. They are ENTITLED to access life’s activities—be it employment, education and recreation. They are ENTITLED to the simplest of life’s realities—using a public bathroom when needed, eating at a restaurant, and employing public transportation to go wherever they so desire.

The ADA is one of the few laws that could actually be called a success in our society. It changed the national landscape not simply for persons with disabilities, but for society as a whole. Our world broadened. Our society looked for the first time from within itself, and had to come to terms with those that it had marginalized for eons.

Unfortunately, the ADA, and other laws that support those living with disabilities have come under attack. Whether it is the new “need to work” laws surrounding Medicaid, the cutting back of funding for special education, or the lessening of responsibility of business owners when it comes to ADA compliance, there are some in our society who value business over people.

There is a bill that has passed the House that would allow business owners that are not in ADA compliance 120 days from notification to rectify the issue before they can be sued. The Bill stems from the sad reality that there are a handful of vulture lawyers who seek out small businesses that are just “out of compliance” with the ADA to sue and make a quick buck. The insurance companies of course settle out of court, but the small business owners are hurt by these lawsuits.

 Over 200 civil rights and disability advocate organizations have come out against the bill. They do acknowledge that there are bad-faith attorneys. But—the way to handle these lawyers is through the Bar and/or losing their license to practice, not by changing the ADA itself. You do not punish the entire disability community because of some peripheral persons, or a few bad actors. You also do not completely change the law so that the protected class is actually harmed by the reevaluation.

Not only are civil rights groups furious about the lag in getting this issue fixed, but they are upset that it is now up to the individual to bring suit or notice the noncompliance before it is fixed. The question becomes: if the ADA is a federal law, and state and local governments need to comply with this law, why is the burden solely the responsibility of the individual and not the government to force businesses to live up to their obligations under the ADA?

The issue actually comes down to the fact that according to the Bill, businesses would not even have to comply with the ADA unless someone brings suit and then they would be given time to fix it. This may sound fair to the average person, but the reality may be that businesses would choose to hedge their bets and not comply with the ADA until someone notices or says something to them about their noncompliance. This represents a dangerous step back for those with developmental disabilities and their rights to the same access afforded to able-bodied people. The arc of justice has, and should continue to, move towards complete and equal access for all; not access after officially notifying and then patiently waiting to be granted the access you were always entitled to. Able-bodied people don’t have to wait 120 days to enter a restaurant. Neither should those with disabilities.

There are many issues facing the disability community of late. Rights are coming under attack. It is important to stay abreast of the changes in Congress to ensure that the future is bright and accessible.


It is important to know your rights and know how to access your rights. Meanwhile, if you do believe that you are a victim of discrimination it is important to know where to find redress:

Americans With Disability Federal Government Home Page  https://www.ada.gov/

ADA Department of Labor  https://www.dol.gov/general/topic/disability/ada

Department of Justice Responsibilities  https://www.ada.gov/doj_responsibilities.htm

Videos about the ADA  https://www.ada.gov/videogallery.htm

File an ADA complaint with the Justice Department https://www.ada.gov/filing_complaint.htm

Office of Civil Rights Enforcement at the Department of Education https://www2.ed.gov/about/offices/list/ocr/index.html

Overview education rights  https://www2.ed.gov/policy/landing.jhtml?src=pn

New York State Department of Human Rights  https://dhr.ny.gov/complaint

New York City Division of Human Rights  http://www1.nyc.gov/nyc-resources/service/1525/report-discrimination

Workplace Fairness Complaint New York  https://www.workplacefairness.org/file_NY


Elise, an award-winning blogger, writes about the practical aspects of raising autistic children at her blog Raising Asperger’s Kids, http://practicalautism.com. She writes under the pen-name Elise Ronan, to protect her sons’ privacy, and has permission from them to tell their story.

Everything Elise writes about raising autistic children can be applied to any disability, invisible or even physical. There is information about creating your child’s support village, and practical information grouped by age. These direct pages can be found on the sidebar on her blog page. She is open to answering questions about her writings and helping other parents where she can. You can reach her at practicalautism@gmail.com.

Elise also writes a book review blog at Journaling on Paper, http://journalingonpaper.com.  She reviews different genres from memoirs, to spy thrillers, murder mysteries, space operas, historical fiction, and more. She also explores the use of language, and its effects.

November News

Hello again!

We don't know about you, but we're getting very excited about our upcoming silent auction and January production! Keep reading for more details and make sure to save the dates!

Best wishes,
Melissa & The Born Dancing Team


Born Dancing Silent Auction

We can't stop talking about our very first silent auction! This "Giving Tuesday" (Nov. 28) give to Born Dancing, and let us hook you up with the coolest tickets, events, and goodies. The auction will last for one week, so bid early and bid often! We've got round-trip plane tickets, amusement park season passes, cool virtual reality sessions, jewelry, fancy dinners, tickets to plays and concerts, and gym memberships so you can go a little overboard with Thanksgiving dinner this year! This is an awesome opportunity to treat yourself or someone you love all while supporting Born Dancing. Bookmark this page, tell all your friends, and let the countdown begin!


January Production

Work has begun on our January Production. The show is inspired by contemporary composers, stories of refugees, and many a powerful lady. We'll be sharing more information about the production and photos from rehearsals soon. 

We hope that you can join us at Riverside Theater on one of the following dates:

  • Friday, January 19th, 2018, at 7:30 pm
  • Saturday, January 20th, at 7:30 pm
  • Sunday, January 21st, at 2 pm

Riverside Theater is located at 91 Claremont Avenue (at W 122nd Street), New York, NY 10027.

'Tis the Season to GIVE!

We're so thrilled to announce our very first silent auction! This "Giving Tuesday" (Nov. 28) give to Born Dancing, and let us hook you up with the coolest tickets, events, and goodies. The auction will last for one week, so bid early and bid often! We've got gym memberships, signed collectibles, unique jewelry, round-trip plane tickets, and so much more up for grabs! This is an awesome opportunity to treat yourself or someone you love all while supporting Born Dancing. Bookmark this page, tell all your friends, and let the countdown begin!

Add event to calendar

 

Happy Fall, Y'all!

Hi There!

We hope you're enjoying the tail end of summer as we dance into FALL!


Have You Met...?

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Meet Stacy Jansen! Stacy has been our Costume Designer on the first two Born Dancing productions and she is a one-of-a-kind special designer and human.

Q: Give us the scoop. Where are you from, etc.?
A: I grew up in Michigan, spent 4 years in Scotland while studying costume design at the University of Edinburgh, and moved to NYC shortly thereafter. In college, I designed costumes for local theater and film productions. Now I work primarily in the film industry but relish the opportunity to create costumes for live performances. The opportunity to see my costumes live, with music and worn by dancers engaged in movement adds so much depth to my design process. 

Q: How did you get involved with Born Dancing?
A: Melissa found me! When she emailed me the brief for the debut Born Dancing production, I knew immediately it was something I wanted to be involved with. That first production was an incredible experience and I'm grateful we were able to connect.

Q: What’s one surprising thing you’ve learned since becoming involved with Born Dancing?
A: I'm continuously astonished by the beautiful things that can happen through collaboration with like-minded people who care about their work. Every interaction with the Born Dancing team is a reminder of that. The shows seem to become more than the sum of their parts. You can't force that "x-factor" into a show, but when it happens it's an incredible thing to be a part of.

Q: If you could design costumes for one person living or dead, who would it be and why?
A: I would like to take a group of children and some Troubadour musicians into a forest, erect a stage and design a musical fairy-tale masterpiece based entirely on whatever inspiration strikes us.

Q: Tell me something I don’t already know.
A: I've recently adopted a 13-foot camper trailer as my semi-permanent residence, as I travel frequently for work. I still maintain space in NYC, but during transient times this tiny base camp/office/workshop provides me with all of the comforts of home, in 90 square feet! It also includes an herb garden, a small library for costume inspiration, and room for numerous textile souvenirs picked up from around the globe. 


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#TBT

Happy Thursday!

We're one day closer to the weekend! Take a break today and check out this throwback. This week we're throwing back to January of last year with this wonderful video by Kami Fares about our very own Sam Caraballo and his life as an actor, dancer, and mask maker. It includes footage from Born Dancing rehearsals featuring Elvig, Michael, and Melissa.


Sunshine, Tan Lines, and DANCE time!

Hello Again!

We hope you're enjoying a fun summer packed with exotic travels, long days at the beach, and new adventures (or at the very least -- summer cocktails and comfy flip flops). We'll hit the ground running again in September, so stay tuned! 


Have You Met...?

Meet Samuel Caraballo. Sam danced in the first two Born Dancing productions and
serves as Advisor to the Board.

Sam dancing in There is Now by Born Dancing, March 2016

Q: Give us the scoop. Where are you from, etc.?
A:
I am an actor, dancer, director, choreographer, theatre educator and mask-maker, with a special emphasis in physical theatre. Born and raised in Brooklyn, I trained with the Dance Theatre of Harlem (New York), the Dell'Arte International School of Physical Theatre (Blue Lake, CA) and Deaf West (Los Angeles). After graduating from the Dell' Arte International School for Physical Theatre in 1998 I returned to New York.

I have conducted many school artist-in-residency programs, summer camps, and workshops for both adults and children. My artistic and educational partners include New York Deaf Theatre, Theatre Access Project/Theatre Development Fund, SMARTS Performance Art Summer, Sign of the Times Theatre Company, Phoenix Theatre for Children, The Ohio State School for the Deaf, and a variety of public and private schools in the New York metropolitan area. 

I am one of five co-founders of the American Dance Theatre of the Deaf (New York) in 1986, and was an acting ensemble member for Onyx Theatre Company (New York). In 1995, I joined Sunshine Too (Rochester) as choreographer and performer. With Sunshine Too I toured extensively around the country and traveled to Finland to perform at the Deaf Theatre International Festival. 

Q: How did you get involved with Born Dancing?
A:
I met Melissa when she was doing a film project, and I was acting for her film project. Then a few years later, I saw Born Dancing was looking for dancers with disabilities and I contacted her. Last year I joined and I was very excited to work with Born Dancing.

Q: What’s one surprising thing you’ve learned since becoming involved with Born Dancing?
A:
I am mostly impressed that Born Dancing works with great diversity of disability dancers. In addition, they welcome people to work together whether they are able-bodied, Little People, use a wheelchair etc.   

Q: If you could dance with one person living or dead, who would it be and why?
A: 
I always wanted to be in performances with Gene Kelly and Fred Astaire, because when I was young I always watched them dance on TV. 

Q: Tell me something I don’t already know.
A: 
I collect newspaper articles, magazines, and videos of my dances with different companies.


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Red, White, and DANCE!

Check us out! This is our very FIRST blog post. We want to stay in touch with you, and we also want to show you some behind-the-scenes action at Born Dancing. Be on the lookout for regular updates (Psst! Be sure to follow us on social media!). In the meantime, check out a highlight from our first monthly newsletter…


Have You Met...?

 Meet  Madeline Charles  (Maddie). She was the very first dancer to join our company!

Meet Madeline Charles (Maddie). She was the very first dancer to join our company!

 Maddie in  Stems,  Born Dancing, March 2016 at Alvin Ailey Citigroup Theater  (Photo: Nicolle Bennett)

Maddie in Stems, Born Dancing, March 2016 at Alvin Ailey Citigroup Theater
(Photo: Nicolle Bennett)

Q: Where are you from? 
A: 
My name is Madeline Charles but everyone calls me Maddie. I was born in St. Louis, Missouri and raised in Milton, Mass., and Bethesda, Maryland. I've lived in NYC since the Fall of 2013. I am 25 years old. 

Q: How did you get involved with born dancing? 
A: 
One day I was searching around on Facebook using keywords relating to dance and dancers with disabilities. I messaged Melissa just to let her know how impressed I was with her mission because my sister has cerebral palsy and LOVES music and dance. I first become involved in social work because I noticed as my sister got older (she is two years older than me) that there were less and less programs for her to be a part of. I noticed that Born Dancing included people of all abilities and all ages and was immediately drawn in. 

Q: What's one surprising thing you've learned from Born Dancing? 
A:
 I've learned that I don't know everything, haha. Being the sister of a non-verbal woman I sometimes feel like I need to be on the defense at all times, ready to put up my boxing gloves against our ableist world for her. And while that is still true I've learned that what's really needed is just to be a good friend, to show empathy (not sympathy), and to listen to people who have disabilities so that THEIR voice can be heard, not mine. 

Q: If you could have dinner with one dancer dead or alive who would it be and why? 
A: Twyla Tharp. The reason I moved to NYC was because I fell in love with Paul Taylor's work through a summer dance intensive. Tharp was one of his wildest company members. I find her completely fascinating and heartbreaking. I'd just want to take her to dinner to learn from her and thank her for letting me feel less alone in the way I feel about dance. 

Q: Tell me something I don't already know 
A: 
Halloween is my absolute favorite holiday and I drag it out for a full week.