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Posts Tagged ‘Kerry Magro’

20 Years of Autism: A Mother and Son Perspective

March 5, 2012 36 comments

This blog post is by Kerry Magro. recently started a new video blog called “My Autism My Voice,” where he discusses a variety of topics. If you would like to contact him directly about questions/comments related to this post he can be reached at kerry.magro@autismspeaks.org or through his Facebook page here.

On January 15th of this year I turned 24. To be honest this milestone really didn’t mean much to me besides knowing that in a year I could rent a car for the very first time. 2 weeks later I received an email from a parent in regards to helping her grandson who has PDD-NOS. Maybe more than any of the other emails I had received before, this question was very detailed asking for several questions regarding topics such as an early diagnosis, therapies, early childhood, how to approach the diagnosis, etc. Even though I’ve helped answer questions before I asked my mom to help assist me in answering her questions.

What I would receive back from my mom was something I didn’t even realize and that was it had been 20 years since I was first diagnosed at 4. 20 years of autism. It made me realize how much time had actually flew by and of how I got to where I am today. I thought about the milestones I’ve  hit: playing for my high school basketball team, being student council president, having a girlfriend, graduating college, becoming a motivational speaker, writing a book, and maybe most importantly…having a voice to be heard. Time slowed down for a bit.

My Mom Wrote to The Woman:

“Looking at Kerry today I wish 20 years ago someone had offered me inspiration and hope that he represents and I can see why anyone would ask the question of how he got to where he is today. His PDD-NOS was severe. Although we did not know what PDD NOS was they mentioned that some children were institutionalized and that’s all I heard.
Kerry was our delightful only child reaching most development (height, weight) milestones except speech until he was 2.5 years old. At 2.5 he started to show extreme signs of sensory integration dysfunction where he was afraid of a wide variety of sensory issues. Wind, rain, water, noises loud and soft were major issues. There was a time when we could not bathe him – uneven surfaces such as sand and or swings where he couldn’t feel the bottom below him were a problem. He was asked to leave two different pre schools because they couldn’t handle him the later he preferred isolation would not play or participate with other children and had delayed speech, limited pretend play, echophilia, twirling, extreme difficulty with transitions and tantrums. He had fine and gross motor delays. When I dropped him in the morning he would scream he didn’t want to go in and when I picked him up in the afternoon I would have to drag him screaming because he didn’t want to leave. Once home with a caregiver he would scream at the top of the stairs “Go away”.
Kerry was diagnosed first by Hackensack Hospital and then by Doctor Margaret Hertzig, The Director of Pediatric Psychiatry at Cornell. Doctor Hertzig is a world-renowned expert in Autistic and Autism Spectrum Disorders. She saw him as he grew marking improvement she saw. Interestingly to us she reconfirmed Kerry’s diagnosis last year for his accommodations for GRE’s as he started graduate school.
The Kerry you see today is not the Kerry I grew up with.
As to care Kerry did not come together for many years when he was diagnosed. Finally we tried to get him into a pre school handicapped class. There was a delay in that so we began Occupational therapy (OT) at home with a Pediatric OT working on the SID issues as well as speech. OT continued at home till he was 7 as well as in school where he was in a multi-handicapped class receiving speech, and OT. At 7 he began intensive physical, OT therapy at Hackensack Hospital where he did a lot of vestibular planning issues. He is seen privately to this day for OT/PT as needed by a local PT.
One of the major things that worked for us was sports. Although he did not want to be around people I got him involved in pee-wee bowling and then sent him to a JCC summer camp for children with neurological issues. The camp was wonderful in that they did a different activity every 40 minutes and the forced transitions helped condition him a lot. The vestibular planning therapy also help a lot.
Kerry started to respond to recognition, praise, rewards and I ran with that, we have a million great job stickers; magnets, trophies and I developed my own token economy barter system with him. If he would try something three times he would get a predetermined prize (seeing a movie, an action figure, a game) that we agreed on. If after the third time he did not want to do something I would agree to let him drop it. Since he wanted to do nothing three times sometimes seemed interminable for both of us but I kept to it and found a kid who loves bowling, played soccer, basketball etc. T- ball was rougher with the co-ordination issues and was one that got dropped but not till the third season.
All this time, speech, physical and occupational therapies continued, we also took lessons piano at the house to help him out.”

To have this written out for me to read left me with so many emotions. Some of the stuff was so long ago I had no recollection of it whatsoever. What stayed with me though was the passion and the love that came with this letter. No matter how many struggles were presented, my parents were always willing to go the extra step to help me and today I want to live by that example to help others.

My parents are strong. They are saints. Without them I have no idea where I am 5 years down the line let alone 20. I know I still have a long way to go but one thing I know is for the next 20 years that I have autism I’m not going to be sitting down. I’m going to fight, I’m going to serve, I’m going to commit, I’m going to conquer and I’m going to communicate for the better day for us now and for the future. Please join me by having your perspectives of autism, both for you and your family heard in the comments section below. Thank you.


The Black, The White, and The Grey

February 6, 2012 14 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University, and is actively involved with our college program. Autism Speaks U is an initiative designed to support college students in their awareness, advocacy and fundraising efforts.

Should I even be surprised? College has taught me many things; how to self-advocate, how to spread awareness, and maybe most importantly that if you have a passion for something you need to go for it no matter the costs. At the same time what college also unfortunately taught me was that there are still a great deal of ignorant people out there that simply think of the black and white and avoid the grey completely.

One problem that I see as a huge indicator of this is the whole concept of “out growing” your autism. When I was first diagnosed my psychiatrist told my parents that autism was a life long diagnosis while at the same time other doctors told them there was a possibility that certain individuals would out grow the symptoms that led to the diagnosis.

I think the whole belief of this puts negative annotations toward our community. Saying someone has out grown means someone can be inclined to say someone was cured of something naturally and diminishes the need for legislation reform and funding. In either case I think we need to avoid those debates as they just cause clutter overall.

I feel more and more that I fall in the ever-growing “Grey” section of people. Sure, I graduated from college and am in graduate school but I’ve had two decades of multiple therapies and learned over time to take care and progress within myself. I’m also clearly not the typical “normal” that some people look for. I have eccentric tendencies that make me unique.

My question for those reading is, “What do you think is unique about autism that makes the understanding of individuality important?”

Let me know if you have any thoughts! Thanks everyone!

I just started a new video blog called “My Autism My Voice,” and this is one of the topics I discuss. This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org or through my Facebook page here.

Kerry Magro Covers ‘Joyful Noise’ Premiere

January 17, 2012 7 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University, and is actively involved with our college program. Autism Speaks U is an initiative designed to support college students in their awareness, advocacy and fundraising efforts.

One night was all it took. My usual routine in college was to wake up, eat breakfast, go to school, and prepare myself for any fun, if not unexpected events that may come my way that day. Tonight was the exception that changed everything. I received an email from Autism Speaks that a famous movie Director Todd Graff (Bandslam) wanted me to help him with his screenplay for an upcoming motion picture called Joyful Noise! I thought to myself, “This may be one of the greatest moments of my life!”

So as a senior in college I had the chance to tie disability advocacy and love of theatre together by helping analyze a character with Asperger’ s syndrome for Mr. Graff ‘s movie, Joyful Noise. The following week I was reading over a screenplay and giving my thoughts and analysis of the character. A few weeks later I was having lunch with Mr. Graff to discuss the character in more detail and I was invited back to help with the casting of the character Walter Hill, a young man with Asperger syndrome. Then, last Monday, almost a year and a half later after the movie was filmed and largely marketed I got to see the Premiere of the movie at Gruman’s Chinese Theatre in Hollywood!

How did I get this lucky? How was this happening to me? This opportunity has touched my heart in a way that I can’t even explain. Without giving away any spoilers for Joyful Noise, which is now out in wide release everywhere co-stars Queen Latifah and Dolly Parton. Then there is the character I helped with Walter Hill (played by Dexter Darden). While reading the screenplay and then watching the film I couldn’t help but feel I saw a piece of myself in his character. I saw his struggle, could relate to his situation and could feel his pain. I then transcended into the whole theme of the movie which is about a Gospel Choir and this is when I fell in love. The music, the relate ability, I felt like I belonged. Like a part of me forever had changed because of the overall kindness of one man to give an adult with autism a joyful opportunity of a lifetime.

As a die-hard movie buff today I know that many people in the movie business would sometimes turn away from taking the time to present these opportunities but this wasn’t one of those times. I became a kid again; the kid that saw the kindness that could come from people. It made me learn that maybe if I wasn’t seeing the kindness in others than I had to just continue on my path to be that man, like Mr. Graff, who is looking at ways for a change for the better by presenting joyful opportunities for people like me.

The two biggest loves in my life have always been musical theater and basketball. When I was 6, my first love came to me. It started when I was going to Camp Tikvah; a special needs summer camp for learning disabled children at the JCC in Tenafly, N.J. At the end of the summer, the campers were teamed up to sing a song, usually to an audience full of parents. This was my first moment I ever got to sing with a group in front of a large audience. Our counselors would hold our hands while we would sing, encouraging us all to sing as loud and as clear as we could. When it was done I remember the tears that flowed down my eyes, being completely shocked and scared of what was happening.

You see, 2 years before at 4 and a half I was first diagnosed with Pervasive Developmental Disorder-Not Otherwise Specified, a form of autism. During this time I dealt with many different sensory difficulties in regards to sound and touch. As you can imagine, because of the cheers and the sounds coming from that audience that day made me feel so uneasy, I didn’t know what to do…

On the way though something spectacular happened… I enjoyed where I was. No matter how frustrating, I remember how much I practiced my lines before and how much fun I had doing it. This is where I got my hook. It was on that stage that day I knew that my love of what I was doing would conquer whatever my struggles may have been. My brain was telling me no but my heart was telling me yes and that was enough for me. Even though communicating this to others was difficult my parents sensed it in me to give me another shot. Next summer I surprised myself by singing my heart out (most of it was yelling but I would take it). Everything started to connect itself it seemed after that. I contribute a great deal of where I am today to my early therapy in regards to speech, social interaction, body communication, and overall confidence to these days.

In college, my drama days ended at a halt based on not being able to find a balance for my school work and theatre. I understood these limitations though. School came first. I had the opportunity to bring some elements back later though when public speaking about my life with autism. A great deal of these two areas went hand in hand for me which led me to becoming involved in disability advocacy from then till this day.

I’m always amazed by random acts of kindness in today’s society. When I was younger I felt like these moments were more consistent and more genuine. As a college graduate who is running through the gauntlet trying to find work, I bask in the opportunity of having these moments. The opportunity Todd Graff offered me now almost a year ago was kindness in one of its truest forms.  I had the chance to do something I had only ever dreamed about doing which I never believed could be possible. Thanks Todd for making a dream come true!

As for the movie, it definitely is a crowd pleaser. The set pieces and musical numbers are dynamic. The acting is electric especially in regards to the chemistry between Queen Latifah and Dolly Parton on screen. In regards to the autism community, there are several autism related topics that are brought into focus that will leave very few dry eyes. All aside, by the end of the movie you’re almost guaranteed to leave with a smile on your face (and if you stay through the credits you’ll see a special thank you credit that I received too).

So, in the end, what I got from this movie was to learn that kindness, acceptance, love, and yes, joyful opportunities can make any dark corners shine bright for individuals with autism and without alike. I hope we can share this message with others.

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Call Me Kerry and Never Rain Man

January 3, 2012 8 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University, and is actively involved with our college program. Autism Speaks U is an initiative designed to support college students in their awareness, advocacy and fundraising efforts.

Do you know that I was once called Rain Man by a college peer? Wow. When I look back at the reason why anyone would say something like that I think of some of the stereotypes of autism. Some think people with autism lack social interaction and others think people with autism are good at math. In the 1988 movie Rain Man, Actor Dustin Hoffman plays a character that is autistic and shows he’s good with numbers but also lacks some communication skills. Because of the popularity of this movie and mainly because autism was still very unknown during the release of the movie it became, for better or for worse, a characterization of what autism could be.

But you know what the problem is here? I’m autistic and I’m nothing like Rain Man. I’m now an adult great with verbal communication, I’m not as good in math and the differences keep piling up. You see, autism is very broad. No one diagnosis is the same and therefore when we think of Rain Man we must think of Rain Man as ONLY Rain Man. He is one symbol of the countless symbols of real people out there that have autism. I think that’s what makes our autism community great. We all are unique in our own way and we all have the opportunity to have our “voices” heard. Sometimes that voice is not a verbal one, sometimes it is heard through our art or music or some other skill or talent we have or simply a smile at our family members. Each and every individual with autism is a new and unique symbol of what autism is today and will be for our future.

So in keeping with the future…

To those who are reading…

Don’t call me Rain Man. Call me Kerry.

Don’t think I’m bad at verbal communication, because in fact in my own way I’m great at communication and I’m getting a Master’s Degree in Strategic Communication to boot.

Don’t think I’ll be ready to help when it comes to numbers, because all I’m going to do is pass you a calculator.

AND, most importantly, just look at me as me. I’m Kerry and there is only one of me. Just like there is only one of you. Let’s embrace the fact that there will only be one Kerry Magro, just like there will only be one Rain Man. We write our own stories based on the biography of life which we are all living through right now. Let’s make sure the chapters we’re writing are good ones, by living it just the way we are.

So please call me Kerry the next time you see me, because that is someone who I  was always meant to be.

I just started a new video blog called “My Autism My Voice,” and this is one of the topics I discuss. Click here for more information. This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org or through my Facebook page here.

The Power of a Positive Attitude

December 12, 2011 2 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University, and is actively involved with our college program. Autism Speaks U is an initiative designed to support college students in their awareness, advocacy and fundraising efforts.

One of the greatest lessons I ever learned in college was the ability to lead through, “The Power of a Positive Attitude.” When I was growing up it was always difficult for me to commit to things, always hard for me to get to that next level. A big part of that was based on my attitude. I didn’t know it back then but I was blind from how my attitude was leading the direction of my life. I struggled so much back when I was a kid it was always tough for me to focus on what was needed to overcome those obstacles.

College did change me though. It made me understand the need to take my attitude that indeed dramatically changed in high school to another level again. This happened when I started to realize there’s a solution to everything. Indeed, some of these solutions are ever changing as our society evolves and gains more knowledge but like what my mom would always tell me, “there are no problems, just solutions.” This helped me tremendously. Whether it was was getting accommodations for classes or even finding a way for an individual with autism such as myself to get a masters degree in strategic communication, the solution was there for me to find.

For all those reading what I hope you take from this is that even though there is a great deal of uncertainty out there involving autism that you understand we must continue to push positivity in everything we do. There are answers out there to help our loved ones succeed, autistic or not. Getting down on ourselves will help no one in our pursuits for a better tomorrow. Our community is in desperate need of this. I know this might be harder for some but for those individuals I ask that you make an effort to lose yourself in your passions to make a difference for yourself and the lives of others.

Tell yourself, there are ways to improve my life. There are ways to help my loved ones. Make these your mantra. We spend so much time sometimes saying what we don’t have, what services we can’t find, what diagnosis’s we can’t get, that we don’t appreciate what we have today. Mahatma Gandhi said, “Be the change you want to see in the world.” Live your life with no more problems but instead strive to find the solutions. And if you can, do it with a smile. It can make a world of difference. It did for me.

This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org or through my Facebook Page here.

This Is Why I Speak

November 14, 2011 18 comments

This guest post is by Autism Speaks staffer Kerry Magro. Kerry, an adult who has autism, is a graduate student at Seton Hall University, and is actively involved with our college program. Autism Speaks U is an initiative designed to support college students in their awareness, advocacy and fundraising efforts.

“My 5 year old son was just diagnosed with PDD-NOS and has no speech. Will he ever be able to speak?” 

Kerry Magro at age 4.

While the young mother stood before me in tears, I felt trapped; trapped because I couldn’t tell her that everything was going to be alright.

When I look back at my life, that 6 year old boy, going into first grade with so much anger, and so many emotions, it was almost too much. I knew back then I was mad. I was lashing out because I didn’t know how to communicate in an appropriate manner. That was almost 16 years ago. I was that 6 year old again. What would it take for her son to be able to speak one day? Would he be as lucky as me?

So, I surprised myself. I hugged her. I hugged this complete stranger for what probably ended up being 5 minutes. No words were said. I could only hear her sobbing and I almost joined her several times. I knew I couldn’t answer her question, but by telling her about my journey, I could give her hope.

I reflected back to the journey that I had had led me to where I am today. The therapies, the special need classrooms, the accommodations, the hate, the ignorance, the awareness, the drama, the acceptance, the struggle, the tears, the heartache, the strength, the friends, my mom, my dad, and above all else the love that has made my journey worth every second.After we hugged I told her my story. I told her about that 6 year old boy and how he became who I was today. 15 minutes later tears of uncertainty had become tears of hope for not only her but for her son.

This is why I speak. Each time I share my story I pray that I’m making an impact on a parent, a family, a friend, etc. for the future of the autism movement. I may not be a scientist, or an expert in the field, I just know what it’s like to grow up–and thrive with autism. So, if you have autism, especially those young adults out there who are trying to spread awareness at the college level or beyond, tell your story.

It’s time for all of us to listen.

*I shared this story with my friend Laura Shumaker on her official website here as well. Thanks Everyone!*

This is one of my Autism Speaks U related blog posts. If you would like to contact me directly about questions/comments related to this post I can be reached at kerry.magro@autismspeaks.org or through my Facebook Page here.

Autism Talk TV 17 – Shonda Schilling, Autism, and Fitness. Oh My!

November 8, 2011 1 comment

This post is by Alex Plank of  ‘Wrong Planet.’

This is the 2nd episode we filmed at the ASA conference in Orlando, FL. Alex interviewed Shonda Schilling about her new book, “The Best Kind of Different: Our Family’s Journey with Asperger’s Syndrome.” Jack talked with David Geslak about physical fitness and autism. Both Alex and Jack talked with Kerry Magro of Autism Speaks about his role as a social media consultant.

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