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Posts Tagged ‘PDD-NOS’

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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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.

Family Services Office Hours – 10.05.11

October 7, 2011 3 comments

Office Hours easily connects families to a wide variety of autism-related resources, including Family Services Tool Kits, and the Autism Speaks Resource Guide, an online national database of autism providers and resources searchable by state and zip code.

Family Services Office Hours is designed to quickly provide access to resources that are available and free to the entire autism community.

The Office Hours sessions are staffed by ART coordinators who are specially trained to connect families affected by autism to resources.

2:32
Hey Everyone! We will be on in 25 minutes! Hang on!
2:57
Just getting ready to go!
3:02
Welcome to Office Hours! Family Services is taking questions and we are here to help offer resources and guidance!
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Comment From Jennifer

My son is 4 and has PDD-NOS. His teacher says she does not see any reason why he can’t be in a regular Kindergarden next year. Is it possibe that his current diagnosis can improve…and then regress as he gets older?

3:04
Hi Jennifer! Children with autism progress at different times. Make sure that he has an IEP in place and be sure to measure his goals and objectives to make sure that he is infect making progress!
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*in fact
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Comment From Guest

My 18 mo old son has just been diagnosed. I’m having a hard time finding treatment options. The state (WI) funding has a 2 yr waiting list and our pivate insurance is self funded so they don’t have to do much. He is in speech therapy 3 x a week and occupational 1 month. What else can I do? He was rated as moderate on the scale.

3:08
Hi Guest! That is great that he is already in those therapies! Early intervention is key! Early Intervention is Federally mandated. Please check out our Resource Guide for your state to find a facility near you. Here is a link!http://www.autismspeaks.org/resource-guide
3:08
Also, here is our 100 Day Kit for further assistance!http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
3:09
Comment From Dawn

Have you heard of Irene law and how it effects grade advancement from third grade forward?

3:10
hi Dawn, I haven’t heard of Irene law. Can you tell me about it?
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Comment From Kristen

I posted earlier Gabe is my 18 month old. With the research I have been doing I have read that there is a higher insidence in siblings. I have a 4 year old, no concerns there, but we also have a 2 month old. How early can you really look for signs of autism?

3:12
Hi Kristen! Clinicians are diagnosing autism earlier in earlier. It is always helpful to learn the signs. Here is a linkhttp://www.autismspeaks.org/what-autism/learn-signs
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Our Video Glossary should also be helpfulhttp://www.autismspeaks.org/what-autism/video-glossary
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Be sure to work with your clinician to follow the progress of your children and to discuss any further concerns
3:15
Comment From melina

I am in England and my 4 year old son has all signs of classic autism, but i cant get a pediatrician to give a diagnosis. any suggestions?

3:16
Hi Melina. You may want to ask your child’s doctor for a referral to a developmental pediatrician or a neurologist. It is very important that you get the diagnosis sooner rather than later. You are doing the right thing by seeking further clarification about your son’s status!
3:17
Comment From Jessica

My son is 4 years old and was diagnosed with autism at the age of 2. He has a HUGE problem with eating his poop and playing in it! I am desperatly asking anyone to help me help him! Thank you

3:18
Hi Jessica. I’m sorry to hear that you are having this difficulty. This is important information for your son’s treatment team to know. You can start by talking to your pediatrician or your son’s IEP team. You should not feel alone with this problem, there are plenty of other parents who have experienced this! Talking to professionals is a key first step to understanding what is causing this to happen.
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Comment From melina

i tried that and the gp who only met my son once for 5 minuets said he couldn’t be autistic because he sat on a chair

3:20
Hi Melina. It is very important that you find a gp or pediatrician who will listen to your concerns and help meet your needs. Do not give up, you are doing the right thing!
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Hi Janine, it important to work closely with your daughter’s clinician and get the support you need to in order to access services.
3:23
Hi Guest and Adrienna! We have a very extensive resource guide that you can use to help find therapists in your area. Simply go towww.autismspeaks.org/resource-guide, click on your state and search among our many categories. Enter your zip code and expand the radius so you can find all possible options in your state.
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Comment From Adrienna

My 3 yr old has been diagnosed with autism and I was wondering if you knew of any sites where I could find behavioral specialists or obtain behavioral intervention in the state of KY?

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Comment From Guest

My son will be 4 next month and is currently recieving Speech and OT therapies but they are now recommending ABA therapy which I am told is very costly, are there any resources in opr around Charlotte,NC that I may check out for this or something else that may assist him?

3:23
Hi Guest and Adrienna! We have a very extensive resource guide that you can use to help find therapists in your area. Simply go towww.autismspeaks.org/resource-guide, click on your state and search among our many categories. Enter your zip code and expand the radius so you can find all possible options in your state.
3:24
You can also find local autism organizations in the resource guide in your state that may have more information for you.
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Comment From Linda

school issues…. getting a one on one aid when starting to help the transition. school wants him in school for a couple weeks before an iep can be set up to see if he needs one. we are afraid to start him without one, afraid of maybe making it very hard as he has not had to do any real transitioning and we feel if he has help for a little while that he may not have to continue to have an aid for a long period. he is high functioning and just needs someone to help him get a start. he is 7 and already a yr behind because of our issues with school.

3:26
Hi Linda! You have the right to call an IEP meeting at any point. You have to be sure to advocate for yourself and child. We have several resources that may be helpful to you. First off, our IEP Guidehttp://www.autismspeaks.org/sites/default/files/gp_iep_guide.pdf
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We also have the School Community Toolkit to assist members of the school community in understanding and supporting students with autism. Here is a linkhttp://www.autismspeaks.org/family-services/tool-kits/school-community-tool-kit
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Comment From donna

my 3 year old son is in the process of being diagnosed and i am having trouble getting his therapy back since he turned 3. he was reciving early intervention and speech therapy but they told me they had to stop because of his age.

3:28
You can also search our Resource Guide for Advocacy in your area http://www.autismspeaks.org/resource-guide
3:28
hi Donna, I am curious. Were there transitional services put in place?
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You early Intervention treatment team should be able to help you make a transition to school based services.
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Donna, you may also want to look up state information in our Resource Guide. Click the categories “State Information – Early Intervention” and “State Information – Preschool” to learn more.http://www.autismspeaks.org/community/fsdb/search.php
3:32
You should also check out our “Your Child’s Rights page”http://www.autismspeaks.org/what-autism/your-childs-rights
3:32
Comment From Courtney

Is there anything comparable to ABA therapy? What can I do to assist him in behavior modifications?

3:32
Hi Courtney! We have a list of various treatment options on our website on the What is Autism page.http://www.autismspeaks.org/what-autism/treatment You can see a list on the left side of the page and read more about each.
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Comment From Andrea

Donna my daughter was two when she was diagnosed and there was a lapse in service when she turned 3 because its defferent providers, but as long as he’s been evaluated by the school district then you’re on the right path.

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Comment From Jessica

anyone know of good neorological doctors in the Indiana area?

3:35
Hi Jessica. Check out our Resource Guide and you can search for lots of resources in Indiana! www.autismspeaks.org/resource-guide
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Comment From Nichelle

My autistic son is 5 and will be 6 next week he is in kindergarten and he has a problem with transitions. He really loved his teachers and friends from pre-k but is really having a hard time in kindergarten so far. His teachers send me notes basically everyday about his not paying attention or disturbing the class or throwing a mouse across the class because he didn’t want to get off the computer. Lately he has been saying shut up at home and school and when he does not get his way he says stupid mom, dad or the teacher. I don’t know what to do. Please help.

3:36
Hi Nichelle! You are right to have these concerns. You are doing the right thing to address these problems early. You should call an IEP meeting with your entire team to address these behaviors. You should not feel alone in addressing problems that he is having at school or at home.
3:37
Check out our IEP guide to learn more about how to work effectively with your IEP team.http://www.autismspeaks.org/what-autism/your-childs-rights
3:37
Your son is reacting and there is a reason for that. Part of the IEP team’s responsibility is to better understand the reason and what the function of those behaviors are for your son.
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Comment From Charteisha

My son is 14 years old and had autism. He has been aggressive at school…hitting students and the teacher. This is his first year at this new school..high school. I am already becoming concern because the school called me yesterday to pick him up because he was aggressive. I don’t want him to be kicked out of school. I plan to increase his medication…Risperdal to hopefully get better control of his behavior. Any other suggestions?

3:38
Hi Charteisha! We are sorry to hear you are having difficulties with your son. This is something your IEP team and a psychiatrist should address to understand the underlying causes.
3:39
We have a great transition tool kit for parents just like you of individuals with autism ages 14-22. It is a guide to help walk you through this often difficult time. We can send it to you for free! Just fill out the form at the link below:http://www.autismspeaks.org/family-services/tool-kits/transition-tool-kit
3:40
I know this may take some tiime but it is so important to have good communication with his teachers and the others who are helping him at school.
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Comment From Amy

I made a comment on how to get a person out of a local trainging center. This person is 40 years of age, counts, knows his color, ABC’s, feeds himself, dresses himself and talks with people. He has Autism and that’s the only reason he is at this trainging center. I would like for him to come live in my home and have a more normal life. Can you help me????

3:42
Hi Amy. Our resource guide has lists of attorneys and advocates that will be able to help you advocate for your friend/family member. Click on your state and then attorneys or advocates and type your zip code. Be sure to expand your search!www.autismspeaks.org/resource-guide
3:43
Hi Adrienna, There is a list of agencies in our resource library.
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Comment From Adrienna

I have tried to look for any financial assistance through on your resource page and everytime I type in my area code and various distances I get nothing. Is there another site I can go to for finding financial assistance?

3:44
You may also want to contact local autism organizations listed in the Resource Guide who may know of other funding sources in your area.
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Comment From Gillian

My son is 2 1/2 and was diagnosed with autism/pdd-nos at the age of 18 months. My husband does a lot of online research and lately all of this information keeps popping up about a link between autism and lyme disease and I wanted to get other mother’s opinions and/or personal experiences with this line of thinking

3:45
Hi Gillian. We are not aware of any relationship between Lyme disease and autism. If you have concerns, you should ask your pediatrician about it. You can also emailresearch@autismspeaks.org to get answers from our science team.
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It is important for all of you to remember that while the internet has lots of perks and is a great source for information, please be careful with what you read, especially about autism. There are a lot of different theories out there, many from untrusted sources!
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Comment From donna

is there any where i can get help to help my family to be able to communicate with my son better?

3:47
Hi Donna! We are in the midst of creating family support tool kits. We had a grandparent guide come out two weeks agohttp://www.autismspeaks.org/family-services/community-connections/celebrating-grandparents
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And now we are working on kits for parents, siblings and friends. They should be out in the next two weeks!
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We also have lots of books in our Resource Library for siblings, parents, and other family members. You can check out our books list at http://www.autismspeaks.org/family-services/resource-library/books
3:51
Comment From Erin

Where does a single parent of a 4yr.old pdd-nos w/3 other children get help for care?No family or friends to help and I work full-time.

3:52
Hi Erin. I am sorry to hear you are having difficulty finding care for your children. We did a Community Connections a few months back that provides lots of information and tips about finding effective respite care. http://www.autismspeaks.org/family-services/community-connections/respite-care-and-autism
3:54
Comment From Guest

My son is 6 and just got a PDD-NOS diagnosis this past summer…Before that he had a ADHD diagnosis which the school did not buy….But NOW they don’t seem to buy the PDD-NOS either?! What can I do to make sure we are all looking at him through the same lense for his next IEP meeting

3:55
Hi Guest. It is important that everyone who works with your son understands his strengths and limitations. This may be done by doing assessments of his different skill sets. The IEP must include lots of assessment data and information about your child’s status.
3:56
The areas of difficulty and strength are much more important than the actual diagnosis since every child on the autism spectrum is so different!
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So it is important to make sure the IEP team and other professionals involved understand all they can about your son. You can read our IEP guide here:http://www.autismspeaks.org/family-services/community-connections/respite-care-and-autism
3:57
Comment From Erin

Is there a possible link between Ulcerative Colitis and Autism?I was diagnosed with UC after the birth of my daughter

3:58
hi Erin- Please email research@autismspeaks.org with your question. They will have articles or recent studies to answer your question.
3:58
Thank you everyone for joining today! Be sure to check out our newest project- a Health and Wellness site that includes lots of tips and resources regarding fitness, sleep and nutrition so your family member can be as healthy as possible!http://www.autismspeaks.org/family-services/health-and-wellness
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We look forward to hearing from you all again next Wednesday at Office Hours! And as always, if you have any questions, please don’t hesitate to contact our Autism Response Team at 888-AUTISM2 or familyservices@autismspeaks.org

Autism TV… Sort of.

May 24, 2011 8 comments

I recently left my longtime career as a local TV news anchor in Baltimore.  I was there for 21 years and during that time my daughter was diagnosed with an Autism Spectrum Disorder (PDD-NOS).  So,  I thought…hey, wouldn’t it be a natural fit if I could take what I know about telling stories and create a   television show with kids who are all over the “spectrum.”  Programming  that shows children and families, from all walks of life, dealing with the challenges and uniqueness of autism.  And maybe we could give them some help or ideas along the way. And maybe we could educate a mass audience about what makes autism special and why we all should care about these individuals who are all around us.

Well, the big cable channels weren’t biting.  The production companies I contacted weren’t going for it either. I mean, in theory, they liked the idea, but in reality they just couldn’t see it being very appealing for the long haul. Of course, I find the subject incredibly appealing and compelling!

Eventually I thought why not do it myself?  With the help of a very talented videographer, a guy who knows his way around the web, and many supportive friends…we created Real Look Autism. My version of Autism TV.

Real Look Autism is a video resource for anyone touched by autism.  We tell focused and beautifully shot and edited stories about therapies and strategies that are working for children on the spectrum. We look for even the smallest measure of success. Our slogan goes like this: “You tell us something that’s working for you…and we’ll show everyone else”.  So, because we look for what is “working”, our short videos have an element of optimism. And how can you not LOVE these kids, their parents, and the teachers and therapists who are so committed.  We keep it real and we aim to spread some hope and understanding.

Real Look Autism.com, thanks for visiting and watching! We hope you LIKE US on Facebook, spread the word and sign up to find out when we premiere another new video.

And besides… we don’t even run commercials… at least not yet!

-Mary Beth Marsden, Founder of Real Look Autism

You say Tomato, I say TomAHto

May 13, 2011 8 comments

This is a guest blog post from Autism Speaks Science Board member John Elder Robison, author of Look Me in the Eye: My Life with Asperger’s and Be Different: Adventured of a Free-Range Aspergian.

Yesterday I listened to a very interesting talk from Catherine Lord, Ph.D., one of the creators of the ADOS test. ADOS is the “gold standard” in the world of autism diagnosis, and she’s a leading figure in the world of autism testing and evaluation, so I jumped at the chance to hear her thoughts on where we’re headed in that regard.

People who receive an autism diagnosis are told they have one of three conditions: Autism, Asperger’s, or PDD-NOS. The big question is: who should be diagnosed with what?  Is there a coherent sense of classification, or is it merely arbitrary or random? She reviewed the diagnostic data for several thousand spectrumites in an effort to determine what caused a person to end up in one of those three categories.

To her surprise, after analyzing the data, she found the principal predictive factor had nothing to do with the individual. Looking at records from a number of good university hospitals, she found places who called almost everyone Asperger, and other places where everyone was PDD-NOS. There was no discernible pattern of variation between individuals; they seemed to simply get different diagnoses in different places.

Was there more to the story?

To answer that, she looked at other factors, like IQ. For example, many people call Asperger’s “autism lite” or “high IQ autism.” Her review of Asperger diagnoses at one Ivy League school bore that out, with their Asperger kids having average IQ of 123. However, other doctors must see Asperger’s differently, because a Midwest clinic in the study has an average Asperger IQ of 85.

She looked at quality of language in older kids and found similar ambiguity. In the final analysis she did not find any consistent measures of the individuals themselves that led to one label or the other being applied.

In my opinion, those findings support the argument that there is no consistent standard that sets the three descriptive terms for autisms apart. A difference at one point becomes invisible at another. For example, you could say four-year-old Mike does not talk so he’s autistic and Jimmy talks up a storm so he’s Aspergers. But what happens when both kids are 10 and they look and sound the same? Were the differences justified? What purpose might they serve by their difference?

Her findings made one more strong argument for combining all autism diagnoses under the heading of autism spectrum disorder, with a described range of disability or affect.

That’s the way things seem to be headed for the next DSM.

At the same time, Dr. Lord expressed concern that many people have a strong personal investment in one diagnostic name or the other, and they should be able to keep using the different terms.

Stay tuned for more tomorrow from IMFAR 2011.

In Their Own Words – Evan’s U2 Experience

November 11, 2010 19 comments

This “In Their Own Words” is by Denise Corbin-Kumar, of Fort Wayne, Indiana.  She is the mother of two boys, one, Evan, has been diagnosed with PDD-NOS, but his school’s testing showed Asperger Syndrome.

My younger son, Evan, has been a challenging child. He was diagnosed with Autism Spectrum Disorder when he was about 5, but up until that point, I just knew that something wasn’t quite right with that kid. He was hyper, into everything, and stubborn. But he was also very loving, very coordinated, and he loved music. When he couldn’t talk, he could sing, and U2 was one of Evan’s favorites.

Evan and U2 go way back. When Evan was 4 months old, the CD “All That You Can’t Leave Behind” was released. We bought it as we left my sister Jenni’s house in Meadville, PA and listened to it all of the way back to Indiana. Everyday when I’d drive Alex to school, I’d listen to that cd, come home singing the songs, and put Evan down for his afternoon nap. I noticed that the song “Walk On” was my choice song to sing, as I rocked him to sleep. As Evan got older, he’d fuss until I started singing that song to him. It seemed to calm him down, so I kept singing it to him everyday. It worked for both of us!

About a year later, the U2 Live in Boston DVD hit the shelves, and Evan loved it! He’d be sitting on the floor in front of the TV, sucking his thumb, and holding a cloth diaper in his hand, watching Bono. If I turned the TV off, or changed the channel, he’d cry and throw a fit! So, I just left it on, and we were both happy!

The song “Beautiful Day” became another one of Evan’s favorites at this time. At age 2, Evan could barely talk, but he’d hum along with the U2 songs, and sometimes he’d sing the end of the phrases. When I’d put him in his bed to sleep, we’d sing a lot of U2 songs, but “Beautiful Day” was one he’d always be happy to hear. I knew that I could use music to teach him how to communicate with people so he wasn’t so mad all of the time.

As U2 released more cd’s, Evan learned the songs and sang along. He didn’t refer to U2 as “U2″, but he called them “Bodo” and when he could speak more clearly, “Bono”. One of his favorite songs is “Out of Control”, and when Evan gets, as he calls it, “that wild feeling inside”, he’ll just sing out like Bono “I’m out of control!!”

We decided that we were going to take Evan to a U2 concert. I had worried for a long time that Evan wouldn’t be able to handle the loud noise of the concert or the huge crowd. Neither of these things were a problem for him. The stage was huge, with lights everywhere. Evan really, really LOVES lights! (He wants to turn them all on, all the time, everywhere we go!)

So, when the woman at the U2 concert said very loudly to her male companion “I’d NEVER bring my kid to a concert like this!!” I yelled at her “why not??” She looked away from me when she heard my reply. She wouldn’t understand anyway! In fact, there were quite a few kids at the concert, so I guess I’m not the only one who wanted to share a great night with my kids.

When U2 finally took the stage on Saturday night, Evan was just screaming “Bono, I’m here to see you” and waiving his hands with huge eyes and a wide smile on his face! The first song they sang is from the new cd, and Evan said “Mom, that’s the song I play on my cd player in my room at night”.  Then they played “Beautiful Day” and Evan could not contain his happiness any longer. He sang all of the words, and threw his hands into the air just like everyone else in the crowd. I guess I shouldn’t have worried about him not having a great time!

I watched Evan enjoy his favorite band, sometimes watching him more than the show on the stage. When they played the song “I’ll Go Crazy If I Don’t Go Crazy Tonight”, they changed it to a dance mix, and Evan was dancing around like he was at a disco. He enjoyed the show just as much as the old people like me who can still remember the first time we heard “Sunday Bloody Sunday” or “Pride.”

Evan kept looking up into the sky at the lights from the stage that were shooting beams of lights into the clouds. He looked at me and asked, “Mommy, is that heaven?” I didn’t know what he was talking about, so I said, “Where, up in the sky?” and Evan said, “No, everywhere here?” I didn’t know how to answer such a question, and I was a little choked up by it. I said, “Well, maybe it is to some people.” Evan replied, “Yeah, that’s what I thought!” I told my husband, Sam, what Evan had said and he just shook his head with a smile on his face and said “That Evan!”

So, when you ask Evan how he liked seeing Bono or how he liked the U2 concert, he’ll probably just say “it was good,” but don’t be fooled. He LOVED it!! Just before the show ended, as he was standing on my chair, leaning into my back so he didn’t fall while he was dancing, Evan put his arms around my neck and said “Mommy, I LOVE this concert! Thank you for bringing me to see Bono!”

It was completely worth the expensive tickets to hear those words, spoken so clearly into my ear, by a boy who not so long ago couldn’t talk, but could always sing the songs that he loved by his favorite band!

Evan dressed as Bono on Halloween

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

In Their Own Words – The Spectrum

July 13, 2010 4 comments

This “In Their Own Words” is written by Lou Tecpanecatl. Lou has a four-year-old son named Diego, who was diagnosed with PDD-NOS  in August of 2008.

From the time we received my son’s diagnosis in 2008 I have spent quite a bit of time reading about and researching autism. One of the first things I learned was that this is a spectrum disorder which affects each individual in a different way.  This also means that people on the spectrum have a wide range of abilities and many excel in their particular area of interest.
In our case I see how remarkable our son’s memory is and how aware he can be of his surroundings at any given time.  He just turned four and while we are unable to hold a conversation with him, his spontaneous speech is picking up and he will request certain items throughout the day. In many ways our boy is just like other typically developing four year olds, becoming a little more independent as he gets older.

This brings me to the point I wanted to make on the idea of spectrums. Aren’t we all on a spectrum of some sort and not just individuals affected by autism? I have strengths and weaknesses just like anyone else and everyone has a unique set of talents. Once we start going to school we are graded on our performance and we all end up at different levels academically. Once we enter the workforce there are those that earn quite a bit money in their careers, there are some who earn very little, and many of us end up somewhere in the middle of the financial spectrum.  The challenges that individuals with autism and their families face can be difficult, frustrating, and at times daunting.  However, I feel that as a society we should really try and celebrate the many different contributions that we all make to this world.  Instead of ostracizing groups of people for perceived differences we should embrace them. We are all part of one giant spectrum with many different abilities, beliefs, and customs. As a father to a child with autism I think it is important for others who are not really aware of the disorder to try and look through the diagnosis.  My advice to them is to try and focus on the person and not just a behavior that may be seem odd or inappropriate. We want the best for our children and most of all we want them to be accepted by their peers.  Whatever abilities a person has, he can find a way to contribute in a positive way that can enrich his life.  We all learn at different rates, and we speak many different languages, and just because at this point in time my son is unable to carry on a conversation it does not mean he is unable to communicate with his family. He just does it differently than most.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.


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