4 Days Until Beast on the Bay – Are You Ready To Beat the Beast?

Barber-Beast-on-the-Bay-Trial-Run_127-smallThere’s still time to register for both the Beast on the Bay and Adaptive Beast on the Bay!

Why is this obstacle course different from other obstacle courses? Anyone can have an obstacle course, but what is important is that we have a course specially designed for people with disabilities. Plus, the Barber Beast on the Bay is a fundraisingBOTB-Adapted-Course_small-1jpg event to help support the Barber National Institute and its work with children and adults with disabilities.

Why have an adaptive course? We believe that all Adaptive Course Map 2014persons should be included, and therefore designed a specialized adapted course for persons with limited mobility, agility and athletic ability. At the Barber National Institute, we strive to “make dreams come true” at all of our events as we welcome children and adults with disabilities, as well as their typical peers.

New this year is that a portion of the adaptive course will run alongside the Beast on the Bay so athletes from both courses can cheer each other on. Over 1,040 athletes have registered for the Beast a9069_403546973091173_419905081_nnd 80 have registered for the Maureen Riazzi adaptive course.

The Beast on the Bay is 10 miles of trails, mud, water and hard-pack surfaces featuring 26 “meaner, badder” obstacles integrated into the course.

The Maureen Riazzi adaptive course is a 1.2 mile loop that begins and 0025_BOTB-Regular-Course-Meghan_smallends in the area of Beach 1 at Presque Isle State Park. This course will accommodate ambulatory participants as well as those in a wheelchair or power chair. Six obstacles will be spaced throughout the course and incorporate a variety of challenges that were developed by a team of physical therapists and educators from the Barber National Institute, fitness trainers and representatives from the disabilities community.

Not only does the Barber Beast on the Bay event raise awareness for a great cause, but it also brings the community together for a fun experience that showcases Erie’s finest assets. I encourage you to register for the event or join the spectators cheering the athletes along the courses, and to join in the post-event party at Waldameer Picnic Groves. So, if you aren’t doing anything this Saturday morning, come out to Presque Isle to watch the race and join us in the festivities.

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Could the Debate Over a Link Between Autism and Vaccines be Resurfacing?

hepatitis-c-vaccineiReport, CNN’s user-generated news community, published a study this month that concluded African American boys are more at risk for autism if they are given the MMR vaccine before the age of two. The author stated that researchers at the CDC knew about the link in 2004 and covered it up. I was shocked to see that this controversy was again on the table. We know that many, many more children are experiencing serious childhood diseases because parents declined vaccinations due to the possible autism link. Rather than simply report this finding I decided to investigate the validity of this claim.


What did I find?

  • The new study was funded by the Focus Autism Foundation, which is dedicated to exposing the causes of autism specifically on the role of vaccinations.
  • The study originally published in the scientific journal Translational Neurodegeneration was removed from public domain pending further investigation “because of serious concerns on the validity of its conclusions”
  • I learned from Snopes.com that the CNN iReport is a platform on which anyone can submit content. The story did not clearly designate the report’s crowd source nature and many readers, including myself, incorrectly believed CNN was doing the reporting as a news network.

My conclusions:

  • Never take a report at face value. Verify the source and do your own research into the validity of the story.
  • Review well respected, scientifically based organizations to see their position on the issue.
  • Determined who funded the research and if they have an agenda or if it is an independent study.

I continue to support the findings of the CDC 2004 study and will strongly encourage parents to have their child vaccinated for protection from serious diseases.

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Would You Consider Participating in a Research Study?

research_puzzleI frequently see requests from graduate students, hospitals and universities asking family members, children and adults with autism to consider participating in a research study. Too often the studies are being conducted in settings a distance from Erie in large cities and university centers. For that reason, our participation has typically been online questionnaires about the treatment that we use and find effective for children with autism. So whether you live in a big city or a small town, there are always opportunities to become engaged in research.

Here are two recent reports that reflect the importance of involvement.

  • study on brain synapses on autism led by Drs. Tang and Sulzer is helping us to understand the differences of brain clinical-neuropsychologystructure that are found in autism. For typical children, the number of synapses decreases as they grow older.   In persons with autism, the number of synapses fails to decrease in the same way as a typical child. This is leading scientists to seek new drugs that will treat autism by restoring normal pruning of brain cell connections.
  • Amy Weitlauf and her team from the Vanderbilt Evidence Based Practice Center reported to the U.S. Agency on Healthcare Research and Quality that there has been a dramatic increase in the scientific evidence backing the vb1effectiveness of intensive behavioral therapy for children with autism. There is a clear consensus that early intensive intervention can significantly improve the lives of children with autism thereby saving money by promoting greater independence later in life.

So often I have read that we cannot find the cure for autism until we identify the causes. However, by participating in research, we can help the investigators come closer to the causes and the most effective treatments. If you are willing to consider some opportunities, I’ve included a few links to pursue.

 

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5 Tips for Transition Planning

e. roosevelt quoteSchool bells are ringing in most neighborhoods across the country.  Yesterday was the first day of school at the Elizabeth Lee Black School.  Approximately 225 children and youth, 3 – 21 years of age, came off their busses.  Most were smiling, but there were a few tears of children who were experiencing their first day away from mom and dad.  For some parents like myself, there is always a tinge of sadness.  Friends’ children are off to college.  Ryan is not.

A few tips I’d like to share with those of you whose son or daughter might, like Ryan, not be on the college track.

  • Whether your child is 13, 16 or 19, transition planning should be your “buzz” word. It’s never too early or too late.
  • You are your child’s strongest advocate. Whether you are speaking to your child’s school teacher or your legislators, you know your child best! If you do not speak up for your child, no one will.
  • Be prepared for this argument: “There just aren’t enough funds.” As an administrator, I know that managing available resources is a challenge, but as a parent I will never accept that as an acceptable response.
Down syndrome gets accepted into college

Rion Holcombe, a 20 year old with Down syndrome, accepted into Clemson LIFE.

There are also new options to consider if your child has intellectual disabilities.

Always keep in mind that there is no one right program for every person.  Consider your son’s or daughter’s strengths and interests and begin the quest.  I would be interested in hearing about programs that you find, are currently using, or have used in the past.

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The Power of A Mother’s Love

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L-R: Emily Pinto Taylor and Josh Taylor in Peru

Guest Blogger: Emily Pinto Taylor

It feels utterly fitting that I write something for this blog, which I’ve read for years and the topic of which is near and dear to my heart. Autism Spectrum Disorders have for me (as they do for so many others) a special meaning – I grew up around kids with disabilities at the Barber National Institute (then the Dr. Gertrude A. Barber Center), where we would visit after school a few times a week, getting grilled cheese sandwiches and fries from our friends in the café and eating hard candies out of my Aunt Gertrude’s candy dish. Between that and my cousin, Ryan, who has Autism, I am lucky enough to have been blessed to know people with disabilities and to have them change the way I see the world in a powerful way.

I’m in medical school now (about to graduate!) and I was lucky enough to spend a Map of Santa_Clotilde Perumonth in July working in a rural hospital and clinic in the middle of the Amazon rainforest in northwestern Peru. While I was there, I had an interaction with a young mother of a child with a disability, which reminded me (as I have seen over and over again) how incredibly strong the love of a mother is for her child.

One day, half-way through the month, I sat with this woman, whose 8 month old son has Down’s Syndrome, and talked about her life. About her hopes for her child, about her experiences after having him, about the baby’s dad, who left her when he saw him, stating, “that is not my son.” About her life now, how she lives with her parents and can’t work because she spends the day taking care of her small baby and isn’t supported. And about her future, as she’s only 18, but with a positive family history for Down’s, her likelihood of having another of her future children have the disease is much higher than the general population.

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Santa Clotilde, Peru

We talked about what that is like for her, whether she understands the significance of that fact and what she imagines life will be like for her son in the future. We talked about whether she understands the risk that she runs, having future kids, but along the underside of the conversation ran the social convention there, which dictates that most people have 4-8 kids; very few people have I met with fewer.  I wanted to speak hope to her, to speak hope over her life and his future with such a genuine passion that at a few points during the conversation, I lost my words. It was like those moments in surgery when you find out the tumor is cancerous or you deliver alive the tiny preemie and watch them move, where you have this mask that covers your face and hat that covers your forehead and all you’re left with are these transparent plastic glasses over your eyes, and your eyes have to communicate everything — all of your fear about this tumor, all of the promise for this squirming baby, all of your hope and love and kindness… all of it. And you raise your eyebrows a little, crinkle your eyes at the corners when you smile, and you hope they can tell, and it’s enough.

Nothing I did that day was enough, but I hope that it came across regardless. I hope that from my bumbling attempts to tell her about my wonderful friends with Down’s syndrome, who are living awesome, successful, happy lives, that she was given a small glimpse of the hope that her son’s life will have. How happy he will be.

She kept saying, “I love my baby, though.” What made me saddest is that she had to keep saying it, as if I’d invalidate it. As if I’d ever want to take that away.

If only we all had that. Had a mom like these mothers, who sleep in the hospital cribs with their kids with piomiositis or pneumonia for the 3 or 10 days they’re hospitalized, sometimes with their two other small kids beside them, the whole family curled up together in a ball in a 3’x6’ space, 4’ off the ground with 2’ of metal bars around the top. The endurance of these mothers is something I will never understand, and it makes me pause before ever assuming anything about them—sometimes they can’t stay to give their child with a raging cellulitis or asthma attack IV antibiotics or treatment. They can’t stay not because they don’t want to save their child, but because when you ask, they live 7 hours away and their other kids are staying in the house alone right now until they get back. And they have to get back.

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Santa Clotilde, Peru

Going back to the States, my impression of mothers there will forever change the way I look at them in the hospital here. I know there is evil in the world, and there are mothers who do not treat their children with kindness and love, who are not the 100% reliable people that we often glorify mothers to be. But I know that I will forever assume the opposite, that a mother (and, for that matter, a parent) wants to do what’s best for their child, and might not know how or have the resources or understand my advice, that they might not be able to stay for IV antibiotics because of their 5 other children living 4 hours away and currently home alone waiting for them, but that they want to. I will always assume that they want to do what is best for their child. And I will tell them that, and often, because I think one of the most validating things for a parent is hearing what a terrific job they are doing. How much more so this is true for a parent of a child with special needs! And how much stronger they are than I (or any of us) ever imagine.

If you’d like to learn more about some of the incredible opportunities for children with Down’s Syndrome in the US, check out some of the links on the previous post!

BIO: Emily Pinto Taylor is a full-time chocolate chip cookie baker and half-marathon runner and part-time medical student (and soon-to-be doctor!) at Loyola University Chicago, Stritch School of Medicine. She is a graduate of Collegiate Academy, Emory University and plans a career working in Med-Peds palliative care.  She is one of Ryan’s most enthusiastic supporters and is always on the hunt for a way to use up those last few summer peaches.

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Autcraft – A Safe Haven For Children With Autism

Autcraft - child playingOnline gaming is not only a great resource for social skills, but also a leisure skill our children can enjoy with their typical peers.  Many children are enthralled with Minecraft, the game that consists of building a world block by block (Lego style).  However, I worry about issues such as bullying, aggressiveness and inappropriate language.  So I was excited to learn about Autcraft, a by invitation only server created by a dad of a son with autism.  Autcraft is described as “the first Minecraft server committed to providing safe and fun (learning) environment for children with ASD and their families.”  How does it work?  In Autcraft, the server is designed to teach players to respect each other and parents are encouraged to assist younger players by demonstrating the mechanics of the game.

To begin you must purchase the autcraft-welcome-page-664x374PC version of Minecraft for $26.  Then you request an invitation from the Autcraft server.  The wait time is approximately one week.  Once you start you will be given a welcome kit consisting of an ender chest, 3 diamonds, a set of tools, and some food. They do not spawn special items or extras in for players and encourage them to adventure out to find items.   If your child is scared of monsters, they currently have 3 different worlds: Peaceful, Hard and Resources World.  The Peaceful and Resource worlds are best for those not comfortable with “monsters.” Hard world will test a player’s ability to keep themselves and their homes safe from mobs that can create explosions, shoot arrows, sword fight, poison and punch. All worlds are set to “normal/survival” and players can die from falling, drowning, starvation, or by lava in all; however, none of the worlds or mini-games allows pvp (player v player) fighting.

afafpov_coverA unique component of Autcraft is their administrators.  The founder and owner, Stuart Duncan, username AutismFather, has a son with autism.  He is also the creator of Autism From A Father’s Point of View.   MathChamp82 is a mom to three boys with special needs including PDD-Nos and ADHD.  LadyCath is Australian with three nephews on the spectrum. Overlord_Krycis is a father to a son with autism.  Farockz is a student from the UK with extensive knowledge of Minecraft and server running.  Last but not least is WeepingWillowTwo, an American expat with a family history of autism.

 

What I really liked about Autcraft was these features:

  • Bullying, killing, stealing, griefing, etc. is not tolerated
  • Swearing is not tolerated.
  • In game ticket/support system. Need an admin to do something, stand where you need the help and use /modreq <message>.
  • Players’ builds are protected using WorldGuard. Ask an admin for protection.
  • All kills, blocks placed, blocks broken, items dropped, picked up and more are tracked so that we can see exactly what happens anywhere.
  • A few mini-games including hide and seek, mob arena, spleef and more.
  • Community Wither fights and other events.

If this sounds interesting to you, I’d suggest that you check out this video.  If you or a family member is an Autcraft player, please tell me what you think of the game.

 

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What Does Chloe’s Law Mean to You?

Chloe's LawDid you know that Governor Tom Corbett signed into law last month the Down Syndrome Prenatal Education Act (Chloe’s Law)?  Originally introduced as H.B. 2111 and co-sponsored by local representatives including Representative Bizzarro and Representative Rapp, this legislation requires healthcare practitioners to provide current information to women who receive a prenatal diagnosis of Down Syndrome.  We have made enormous strides in our knowledge and understanding of Down Syndrome these past 10 years, so it is essential that parents have access to resources that are evidence based.  It was not that long ago that the life expectancy for persons with Down Syndrome was only in their mid-20s.  Today, I know many adults with Down Syndrome in their 40s and 50s. Down Syndrome Flower Garden

For those not familiar with Down Syndrome, it occurs when an individual has a partial or full copy of chromosome 21.  One in every 691 babies in the United States is born with Down Syndrome.  Over 400,000 persons are living with Down Syndrome in the United States.  Dr. Kishore Vellody, medical director of the Down Syndrome Center at the Children’s Hospital of Pittsburgh, noted that the termination of pregnancy rates in the United States range from 60 – 90% when a prenatal diagnosis of Down Syndrome is made.

The Department of Health is charged with updating and maintaining the informational publications on its website.  For further information on Down Syndrome can be secured through:

This powerful video answers one mom’s question when her baby was diagnosed with Down Syndrome.

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