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January 31, 2014

Eight at the Summit

"Living, Loving, and Working" were the words printed in black and orange on our T-shirts, as we proudly returned to the yearly "Leadership Summit" at the CUNY Graduate Center recently. Last year, the Self-Advocates presented their Moth Stories, receiving a standing ovation. This year, we were invited by YAI staff who are singers and musicians, and asked to join them in performing the song Innovate: Zimbabwe by Bob Marley. We sang our part of the song proudly: "Brother our rights, our rights, It’s so right! We gon live, We gon love, we gon work, WORK FOR OUR RIGHTS! Innovate!

Afterward we joined a post-event celebration at a nearby pub, all of us sitting enjoying the foods served, saluting every person who helped and guided us, including CEO Stephen Freeman, the band, each other, and our late friend Melvin Palmer. It was a great day to be a self-advocate and a great day for all YAI staff. As Car'Melo would say proudly, "azucar!"  Me, I would add "palante" English for "go forward!"

First article

Tags: Advocacy; Person Centered

December 25, 2013

Helping Others Improve Themselves

One of my earliest routines I had was getting the mail. For as long as I can remember, I would brave the heat, cold, rain and snow and walk down the path in my front yard just to see what the mailbox held. To my family, my routine of fetching the mail was a normal part of being me: Something I did because I enjoyed it or just because I could. They had no idea of the truth, of why I really got the mail six days a week. They had no idea getting the mail had become routine because I always hoped that, one day, I would open the mailbox, stick my hand inside and pull out an invitation addressed to me and not to my sister.

Almost two and a half decades later, I'm still the one getting the mail every day. Now a days though, I'm doing it because I enjoy it or just because I can, and not because I'm still hoping that SOMEONE, ANYONE will reach out to me and pull me into their circle of influence and friends.

Suffice it to say, I've changed a lot in the last 24 years, usually for the better. While some changes were made due to the natural process of growing up, others were made with the help of professionals and medications. These changes were both small and large in their impact, and they all made me who I am today. However, my most defining experience in both the past and present is with the National Institute for People with Disabilities of New Jersey's Asperger's Skill Building Network (ASBN). Thanks to the group, not only do I have friends, but I also know how to make them. Furthermore, I know how to have a conversation, how to recognize how a person is feeling and even the best way to interview for a job. It is also thanks to this group that I have a job as an intern. In fact, my internship is provided by ASBN, giving me the opportunity to work alongside the program and people that have taught me so much.

If, just three years ago, someone had told me that I would have friends, a job and the skills necessary to keep said friends and job, I wouldn't have believed them. The idea that I, the girl who was teased and excluded and thought of as weird could be a 'normal' person was ridiculous. Yes, I wanted friends, yes I would like to earn money in a job, but the problem was that friends and employers didn't want me. As great a person as I knew I was, not one person in the world could see this.

For the longest time, I was angry at the world for ignoring me. I had so much to give and no one was willing to give me a chance. They condemned me before they ever knew I who I was. At the time, I had no idea that the one I should have been angry with was myself. I was the one who couldn't adapt to the world, I was the one who was acting in a way that was far from socially appropriate. Then again, how could I know I was being socially inappropriate? I had no clue that there was a right way to act, and that if I acted that way, I would get what I wanted.

As a participant of the Asperger’s Skill Building Network, I learned all the little social cues and tricks for making and keeping friends, for maintaining a job and even just expressing myself with no more than a smile. For the first time in my life, I saw there was a way for me to fit in, for me to have friends and have fun and not like a third wheel or a pathetic loser whose only real friend was my mom and dad. ASBN completely changed my life by teaching me the skills I needed to get along in the world. And, over two years after graduating from the program, ASBN is still providing me with ways to grow.

Today, rather than be a participant of the group, I am an intern.  I've been an intern for a little over a month now, and I've already learned so much. Not only am I getting real world experience on the job, but I am also getting the rare opportunity to get feedback on the job I'm doing. With this internship, if I make a mistake, I don't have to worry about getting fired or yelled at. I know that my employer will tell me what I've done wrong and allow me to fix my mistake without kicking me to the curb. Thus, I am able to work in a nearly stress free environment and, at the same time learn how to correctly implement the job skills I learned two years ago.

Perhaps more importantly than work skills and experience, the internship is providing me with a totally different way to view ASBN. As a participant, I defined my experiences in how ASBN could help me. As an intern, I hope to define my experience by how I could help others LIKE me. See, when I look at the current participants, I see a little of myself in all of them. I see their loneliness, their frustration and above all, their desire to make themselves better. Looking at them, I can see how I must have been only a few years ago. I get the chance to see just how much I've improved, and more importantly, provide others a way to improve themselves.

First article

Tags: Autism; Education; Person Centered; Recreation; Employment

As I stared into space at Gate 34 waiting for my plane to board, my phone buzzed. Expecting another in an endless stream of Groupon offers, I opened my inbox ready to delete it. The email was anything but a discount coupon.

My client was in distress. He was exercising but still gaining weight. He was trying to make plans with friends but getting no responses. He said he felt helpless, and that the feeling was heightened by the approach of the holidays.

As I polled my neurodiverse friends, I saw that my client was not alone. In fact, I learned that the holidays are even more nerve-racking for my neurodiverse friends than for most neurotypicals. Travel is not just a hassle, it is over stimulating. Family members are not just difficult, they can be ignorant and hostile. Even mundane things can be problematic. As Alexandrea Van Der Tuin, an autism advocate, points out, "People with ASD can react negatively to food, music, perfume, and even the spike heels we feel forced to wear."

And then there is the stress of holiday parties.

If you have autism, chances are you struggle with developing social relationships. Chances are that you are single at holiday time. While you may feel lonely year round, that feeling is worse when you open a holiday party invitation that encourages you to bring a date.

What should you do when that invitation comes? Let me offer you five suggestions:

Embrace Holiday Parties As an Opportunity
There is nothing wrong with going to a holiday party alone as long as you approach it with the right mindset. In fact, with the right mindset, you can actually improve other people's experience.

When arriving at the party, seek out people with whom you are comfortable. If it is an office party, approach the person you know best at the office. If it is a family gathering, chat with the person you get along with best. Use the time to learn something new about him or her. (My favorite line is, "We've known each other for a while. What is something interesting that I may not know about you?”)

Ready to take it to the next level? Use this little social trick — Focus on chatting with the date of the person you already know. Why?

First, the date doesn't know many people at the party either. He or she probably feels awkward and ignored. He or she probably came to the party as a courtesy to your colleague or family member. You can make him or her feel comfortable by showing interest and starting a conversation.

Second, your colleague or family member feels pressure to introduce his or her date to the other party goers. Inevitably, those introductions lead to no conversation. By engaging your office buddy or family member's date in conversation, you are actually doing a favor for your office buddy or family member. 

Third, you get to practice your conversation skills on a stranger and learn about someone new. It may even expand your Love Network, which is your circle of friends who can help you find potential partners.

Don't feel pressured to have an endless conversation or jump from person-to-person. "Give yourself permission to take a brief break," says Dr. Rebecca Sachs, Clinical Psychologist at The Midtown Center for Cognitive Behavioral Therapy in New York City. "Take a quick walk, go to the bathroom, write a text to a loved one or take 10 deep breaths when you start feeling overwhelmed."

Bring a Friend Instead of a Date
Believe it or not, you may know people who want to go to the party you are trying to avoid.

Do you have a friend who lives too far away from his or her family? He or she may be thrilled to celebrate with yours.
Do you have a friend who wants to network with your officemates? A holiday party is a great time to for your friend to network with people — especially bosses — who are ordinarily busy with other things. 

When choosing a friend to bring to a party, aim for one who will either include you in his conversations with others or keep you company throughout the night. Avoid bringing a friend who will walk in with you and then ditch you.

Get In, Say Hi, Get Out
Have you heard of the "Irish goodbye?" Neither had I until my Irish friend told me about it. It means leaving a party quietly, without anyone noticing.

Sometimes going to a party is mandatory. Your boss expects you to be there or your family expects you to be there. In that case, do the bare minimum — get dressed for the occasion, walk into the party, say hello to all the people who expect to see your face, and then you disappear without a sound.

While the "Irish goodbye" may be rude for a small dinner party, there are no expectations of you at large parties. "Show your face" at the party and then treat yourself to fun elsewhere.

Skip the Party and Focus on Yourself
"Own your feelings of loneliness and accept them," says Sharon Valencia, program associate of Ladies on the Spectrum Connection. "Once you have accepted the fact that you are lonely, go out there and be active. Go out for a jog, work on an art project, reorganize your closet. Take advantage of your time alone to be productive on projects that are meaningful to you." 

That is exactly what many of my neurodiverse friends do. Even those who have come to terms with their loneliness skip holiday parties altogether. There’s no shame in focusing on you.

Skip the Party and Focus on Others
One of the best ways to feel good about yourself around the holidays is to help others who are less fortunate. There are a million ways to do that, including volunteering at a food bank, visiting the homebound, or even visiting your friends who are also lonely at this time of year.

If you're having trouble figuring out what volunteer opportunities are open to you, here are some suggestions:
•    Google "volunteer opportunities in [insert your location]"
•    Ask the director of any organization of which you are a member
•    Ask your therapist or mental health professional
•    Ask the clergy at your house of worship

The truth is that you can't avoid the holidays, the inevitable holiday parties, and the feelings associated with them. But you can embrace those feelings and channel them toward more productive ends.

How do you plan to embrace and channel your feelings around the holidays? Share your thoughts in the comments, below.

First article


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