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 firstname.lastname@example.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.
Over the weekend, the great state of Florida kicked off our Walk season in Palm Beach and Miami. Both walks were a success drawing big crowds and raising funds for Autism Speaks’ work funding innovative autism research and family services, to increase awareness about the growing autism health crisis, and advocate for the needs of individuals with autism.
In Miami an estimated 25,000 plus walkers participating and are expected to raise over $700,000! Under the leadership of our Walk Chair Manny Gaunaurd, as well as Board Chair Al Lopez, Miami once again set records for its Walk! Corporate sponsors Toys “R” Us, IMUSA (who had especially designed an Autism Speaks frying pan), Sardanos Supermarket, Johnny Rockets, FedEx, DHL, BDO, South Florida Ford, and many, many more were on hand to lead the celebration. Particular thanks are also in order to several other top corporations including Total Bank, and our good friends from Buffalo Wild Wings.The day was highlighted by a young woman with autism who serenading the crowd with songs of hope and joy. We were also delighted to be presented with the first ever key to the city of Doral by Mayor Carlos Gimenez.
Palm Beach welcomed more than 7,000 people took part in the Walk fun raising over $344,000! Walk Corporate Chair Denise Negron, Chair Laura Pincus and Co-chairs Amy Schwartz and Debra Rosenfeld along with their amazing Walk Committee and 200+ volunteers made sure that the morning went off without a hitch. Unfortunately, the one thing out of their control was the weather. In the interest of public safety, the actual walking portion of the day was canceled due to severe storms and high winds, but the activities surrounding the Walk, though, were enjoyed by the thousands of walkers who came out for the event! The event was emceed by NBC News Channel 5’s West Palm Beach Anchor, Michael Williams. Honorary Chairs Suzanne and Bob Wright, co-founders of Autism Speaks, addressed the crowd with moving speeches, motivating everyone to Light It Up Blue on April 2 and demanding action for the passage of the Achieving Better Life Experience Act (A.B.L.E – legislation allowing families raising children with disabilities to save tax-free for their future needs) in Congress.
Here’s some fun tweets!
Check out some of these awesome photos from both events!
‘Ground breaking’ new ministry caters to families with autistic children (Observer & Eccentric)
Karen and Paul Schmid know what it’s like to watch an autistic son struggle with sitting through a mass and they wonder about other families who avoid church altogether, because it’s just too hard. Read more.
Toys R Us Helps Shine a Light for Autism Raise Awareness (BSC Kids)
Autism Speaks is an advocacy for autism and Toy “R” Us is having a fundraiser in its stores for two months for Autism Speaks. Donations will be collected at all Toys “R” Us , Babies “R” Us stores and online at Toys “R” Us.com from Thursday, March 1 through Monday, April 30 2012. Read more.
‘Army’ helping autistic Plainfield boy afford dog (Plainfield, Conn.)
Alexander’s Army is on the march and won’t rest until it raises the $10,000 needed to buy a specially trained dog to help its young namesake cope with autism. Read more.
£1m donation to help Scottish scientists find autism cure (Scotland)
An IT tycoon turned philanthropist has donated £1 million to the University of Edinburgh to help scientists find a cure for autism. Read more.
Autism walk’s cancellation doesn’t dampen support at West Palm Beach fund-raiser (West Palm Beach, Fla.)
Gusty winds and fast-moving thunderstorms this morning forced organizers for Palm Beach Walk Now for Autism to cancel the event’s 3-mile walk along Flagler Drive, but the bad weather didn’t dampen the spirits of the 5,000 people who showed up to help raise money and awareness for the developmental disorder. Read more.
Autism Speaks’ daily blog “Autism in the News” is a mix of top news stories of the day. Autism Speaks does not vet the stories and the views contained therein do not necessarily reflect Autism Speaks beliefs or point of view.
Time is running out to register for the Association of Professional Behavior Analysts (APBA) 2nd Annual Convention in Tampa on April 12-14, which will offer informative sessions for both ABA practitioners and consumers. Autism Speaks is hosting an all-day pre-convention workshop on April 12, entitled “Implementation and Enforcement of Autism Insurance Reform.”
The workshop presenters will include Lorri Unumb, Esq., vice president of state government affairs and Judith Ursitti, director of state government affairs, along with Bryan Davey of ACCEL, Billy Edwards of Behavioral Innovations, Gina Green with APBA, and Dan Unumb, with South Carolina Legal Services.
To learn more about the Autism Speaks workshop, go here. To learn more about the APBA conference, go here. Early registration, including discounted hotel rates, ends March 23!
I want to share with you the excitement I felt at this week’s strategic planning meeting for our new Move the Needle Initiative. Autism Speaks brought together experts in the field of early detection and intervention for autism spectrum disorder (ASD), with representatives of federal agencies such as the U.S. Health Resources and Services Administration, the Centers for Disease Control and Prevention and the National Institutes of Health to create a national plan for lowering the age of diagnosis for ASD and improve access to high-quality early intervention services for all children with autism.
While researchers have made great progress in developing screening and diagnostic tools, the average age of diagnosis remains stubbornly close to 5 years, even higher among some ethnic minorities. Even after their children are diagnosed, many families lack access to the best early intervention therapies.
Our meeting was a great opportunity for exchanging ideas between disciplines. We heard from family members, pediatricians, policy makers, clinicians and researchers who are evaluating the best ways to put effective strategies and tools into pediatrician offices and the broader community. Representatives from all part of Autism Speaks attended to help us identify ways to harness our powers together to “Move the Needle.”
Experts from outside of autism, including one from the field of breast cancer, shared their knowledge of effective ways to improve early detection and access to services. On the first day of the meeting, we heard about the latest findings on screening, diagnosis, early interventions, access to services in underserved communities and innovative technologies that have the potential to improve access among underserved children and their families.
On day two, we split into working groups to develop solutions to the barriers that have interfered with the delivery of earlier diagnosis and treatment in our communities. This included taking the first steps toward creating a new agenda for collaboration between public and private organizations. We brainstormed ideas on how this could be done as soon as possible by building on the tremendous progress of recent years.
Though I have only begun to pull together our thoughts and ideas, I want to share a few important issues that floated to the top of the conversation:
- Family empowerment was a common theme. Studies clearly show that greater engagement and empowerment on the part of families decreases parental stress and increases satisfaction with services. Likewise, we know that children who have the best outcomes tend to be those whose parents are actively engaged in treatment. We discussed several strategies to empower families.
- We explored a concept we call task shifting, to help address service shortages in many communities. We recognize that, through training, we can tap professionals such as nurses, “birth-to-three” service providers and community volunteers to provide services such as screening and family follow up. This approach can provide families with more professionally delivered services than, say, the typical pediatrician can offer.
- We agreed that we must harness the potential of technology. Smart phones, iPads and video conferencing are all ready to be developed as tools for improving access to services – especially important for underserved populations such as children in rural areas.
- Recognizing that pediatricians play a central role in autism screening, we discussed many ideas for enhancing pediatrician awareness and skills, including their ability to connect families with the services they need.
These are just a few ideas that came out of this inspiring meeting. It provided a great start to realizing our long-term vision of creating a national agenda through private-public partnerships that focus our investments in research and services in ways that will lower the age of diagnosis and improve access to quality early interventions for all children.
Your feedback means the world to us. Please leave a comment and send us an email to ScienceChat@autismspeaks.org.
The 11th Annual Walk Now for Autism Speaks Palm Beach Draws Big Crowd for Autism Awareness in Florida
On Sunday, March 4, 2012 – More than 7,000 people, including individuals with autism, their families and friends attended the Walk Now for Autism Speaks Palm Beach at City Commons in Downtown West Palm Beach, Florida. The Walk has raised over $344,000 so far, all of which will support Autism Speaks’ work, both locally and nationally fund innovative autism research and family services, to increase awareness about the growing autism health crisis, and advocate for the needs of individuals with autism and their families in Palm Beach and beyond.
The event was emceed by NBC News Channel 5’s West Palm Beach Anchor, Michael Williams. Honorary Chairs Suzanne and Bob Wright, co-founders of Autism Speaks, addressed the crowd with moving speeches, motivating everyone to Light It Up Blue on April 2 and demanding action for the passage of the Achieving Better Life Experience Act (A.B.L.E – legislation allowing families raising children with disabilities to save tax-free for their future needs) in congress.
Walk Corporate Chair Denise Negron, Chair Laura Pincus and Co-chairs Amy Schwartz and Debra Rosenfeld along with their amazing Walk Committee and 200+ volunteers made sure that the morning went off without a hitch. Unfortunately, the one thing out of their control was the weather. In the interest of public safety, the actual Walking portion of the day was canceled due to severe storms and high winds. The activities surrounding the Walk, though, were enjoyed by the thousands of walkers who came out for the event. Before the weather became a factor however, the second annual Run before the Walk took place with more than 200 runners lacing up for autism awareness.
SheKnows.com, the online living magazine, was on hand to promote their “She Knows Where the Other Sock Went” dress. The campaign features Autism Speaks’ long-time supporter and Grammy Award Winner Toni Braxton wearing the dress created by celebrity designer Michael Costello and photographed by renowned fashion photographer Nigel Barker. The unique, high-fashion gown made out of socks that are missing their mates was displayed at the Walk and will next travel to Los Angeles later this spring to be auctioned off with all proceeds benefiting Autism Speaks.
For the sixth straight year, Toys”R”Us and Babies”R”Us proudly serves as the North American sponsors of Walk Now for Autism Speaks. The company’s mascot, Geoffrey the Giraffe, stopped by the Walk to meet and take pictures with walkers. Additional sponsors included: Sandra C. Slomin Foundation and Family Center for Autism and Related Disabilities, South Florida Ford, TD Bank, Palm Beach Gardens Whole Foods Market, Palm Beach Spine and Diagnostics, Northwestern Mutual Financial Network – Striano Financial Group, St. Mary’s Medical Center, The Children’s Hospital at Palms West, and Searcy, Denney, Scarola, Barnhart, & Shipley, Gunster, and the Miami Marlins.
Also taking pictures with families was beloved McDonald’s mascot Ronald McDonald. People visited the MedClaim booth for their chance to win a free iPad and South Florida Ford Dealers provided an Official Pace Car for the start of the Walk. They also made generous donations for everyone who logged into their Facebook page. Children from Allamanda Elementary wow’d everyone with a dance, The Exceptional Theater Company entertained the crowd with a song, and Makayla Kelly kicked off the Walk with the National Anthem.
Walk Now for Autism Speaks are the signature fundraising events for Autism Speaks, raising more than $28.5 million in 2011 in 85 cities across the U.S. and Canada to support autism research, awareness and advocacy. Last year’s Walk Now for Autism Speaks Palm Beach event attracted more than 7,000 walkers and raised over $390,000 for families and individuals. Autism Speaks has provided funding to Palm Beach services providers, including Project LifeSaver through our Family Services Community Grant program. Autism Speaks science grants have supported research at The University of Miami and Florida International University.
We are pleased to announce that on March 6th we are moving our blog onto the Official Autism Speaks website. We are making this move to serve you better!
We know that it will take some getting used to, but we are here to help you adapt. Here are some quick answers to questions you may have:
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We’ll try our best to make bookmarks still work but sometimes we may not catch changes in time as we sync content from our old WordPress blog to our new Web site. We apologize in advance for this. If you have any questions, please feel free to email email@example.com
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