Breaking Down Barriers
Successful tips from successful families
By Lisa Ackerman
When you get the news that your child has an autism diagnosis it IS an overwhelming experience. I know, as I have been there. That is why TACA was born. I never wanted another family to feel the same way I did almost 13 years ago.
Even TACA families with unlimited resources of time and money are struggling. TACA doesn’t care about your socioeconomic status, your ethnicity or where you live. We support you just the same.
Many TACA families are living average to below average in the salary world, but above average in their ability to open doors for their kids. With the past 12 years of supporting these families under my belt, I have seen common characteristics on what these families can do for their kids. They are my heroes.
By sharing this information, I want to help families overcome any barriers they might encounter. Every family should know what these common characteristics are and use them with best practices to help their own child.
Here is what they have done:
Step one: GET CONNECTED!! Good things happen when you integrate and mingle with forward thinking, positive parents. The folks connected are the families doing better overall. They plugged into TACA via Live Chat, meetings and always via a free, trained, experienced TACA mentor (1)
Getting connected can be seen in so many ways. They have access to meetings and speakers, free library books, parent feedback; they get plugged in at these efforts on deals and family discounts, and interact with movers in their community. They are the definition of connected.
Step two: Figuring out “Who and what?” These families attended a local or regional conference. They went prepared by researching speakers (or speaking to their free TACA mentor) that could possibly help their child based on their unique issues. They arrived at the conference with their child’s binder and introduced themselves to doctors, vendors, therapists, researchers asking questions. These questions were answered for free. They narrowed the large field of providers to who they felt a connection and who they felt could help their child. After receiving valuable information they trusted their gut. Thankfully, TACA has scholarships for families in need (2) or have used TACA resources: “Who Pays for What” and “Biomedical on a Budget” to make these steps happen. Thankfully, Miracle Flights helps TACA families get there – wherever those resources are for FREE. (3, 4). Often these families get to conferences for free because they sign up early to volunteer AND learn.
Step three: For meetings they drive by topic
There were over 250 TACA meetings in 2011. Many of these families drove to TACA chapter meetings that were often 20, 30, 50 minutes or several hours away motivated by the topic important to them. While I know TACA is only in 18 states, I do know many families who cross state lines to get the information they need. Many of these families found child care and used the time to decompress and revitalize their energy to help their child be the best they can be.
NOTE: I wish there could be a TACA location wherever we are needed. The cost is not something TACA can afford. In addition, we need volunteers at each location to support and sustain the efforts once we establish a chapter. We love it when outside donors help us help communities in need.
Step Four: Doctor travel time – they secure physicians that are not typically down the street. They secure folks that are experts in addressing their kid’s needs. At the conferences you go to, it is worth listening to doctors speak, catching them during the question and answer period, and offering to buy them a snack for a moment of their time. For years, my son’s doctor lived on the opposite coast. We were separated by almost 3,000 miles. I was able to work with the doctor to see him annually for our visits at convenient locations (sometimes on vacation and often at a conference) with my child in tow and provide follow up via email and phone consults to make sure we kept things on track. Those 3-5 hours per year consulting with a doctor where I had a more direct connection and they provided specific expertise was the best time ever spent. For my son, he got the resources needed from the expert that could help him.
Step Five: Breaking down the wait list: when you have a child on the spectrum, many good resources have wait lists for new patients. These wait lists could be up 3, 6, 24 months or more until there was an open time slot. Some have closed accepting new patients in their practice. These families found ways to move that wait list to a shorter time period by asking for any cancellation (even for a closed practice.) The first step, make sure the office has all the new patient paperwork and other items needed for your child – for example, copies of detailed reports from previous years. Then offer to fill ANY cancellation with a phone consult. Once you have a phone consult, you are a patient, and then can schedule a follow-up appointment that works best for your schedule. Get to know the front desk reception, know their name and call to check-in each month. Many of these offices know that parents who follow up and check-in frequently make good patients and often follow protocol in detail. They appreciate parents who are kind and follow through on each step. They are not bugged by families that check in on their wait list.
Step Six: Create a plan and annually review it – the TACA Blueprints help families create a plan for treatment and to use as a guide for their next steps with their professional team (5). They review this plan each year to make sure things are moving forward in a positive direction, and to plan their next steps. A journey of a thousand miles starts with one step. Let TACA be your guide. Thousands of families breaking down barriers stick to moving through the TACA Blueprints as their primary tool.
Step Seven: Tired? Read staying in the game - Everyone gets tired. Writing this article has made me tired so I know how families must feel reading it! I wrote about this topic recently and know when to say I need a break and how to stay engaged on the autism journey (6). I still refer to this article to keep me focused on helping Jeff – even 13 years later. I also give myself a much needed break when I need it. That way I am refreshed and able to jump back in with the energy I need.
A great example that exemplifies barrier breaking is our TACA Coordinators, mentors and key volunteers. They are volunteering hundreds of hours a year to help TACA help families. They frequently drive many miles to and from meetings and coffee talks in order to go where the families are. None of these volunteers are reimbursed for mileage or paid for their effort. They do this because they love seeing how families feel inspired after each effort. They cannot wait to talk to families in need at conferences, meetings, and coffee talks – USE THEM! They are incredible resources who are connected, ready to share valuable and time-saving information. I love these folks. We could never pay them what they deserve!
The goal is setting a plan, gearing up to help your child, and then finding a way to break down barriers but doing that with the help of families that have paved the way before you. They want to share and help you. These steps exemplify families who excel, not in their pocket book, but in resources to break down any barriers. It is amazing what these TACA families have done! I am inspired by them and just had to share.
Resources:
1) Find a TACA Chapters http://www.tacanow.org/local-chapters/ . If there isn’t one by you – check out TACA live chat for support. http://www.tacanow.org/about-taca/real-help-now-live-chat/ and TACA Parent mentors http://www.tacanow.org/about-taca/parent-mentor-program/
2) TACA Family Scholarships http://www.tacanow.org/about-taca/family-scholarship-program/
3) Who pays for what http://www.tacanow.org/family-resources/who-pays-for-what-a-guide/
4) Biomedical links
a. Biomedical on a budget http://www.tacanow.org/family-resources/biomedical-treatment-on-a-budget/
b. What is Biomedical treatment for autism http://tacanowblog.com/2011/10/13/biomedical-treatments-and-autism/
5) TACA Autism Journey Blueprints http://www.tacanow.org/family-resources/autism-journey-blueprints-guide/
6) Staying in the game http://tacanowblog.com/2011/11/03/staying-in-the-game/
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Gladiator Tough
By Lisa Ackerman
Late on a Saturday in April, I discovered there was dirt in places I’ve never expected to find it in. And for the first time in years, I’m not talking just about autism!
On that fateful Saturday, I completed my second Gladiator Rock N Run. Let me just say I skew the median age quite a bit. It is a bunch of participants in their 20’s and 30’s mixed in with folks like me – in the more than 40 something category! That’s 4,000 or so of us getting dirty for a good cause–becoming Gladiators just for that one day.
Here is the premise of this event: there is a whole lot of mud, obstacles of walls, pits, water and more mud, and about 7k of running. What is hard is running after you’ve been water or mud-soaked, but the obstacles are something else! They require ropes, tunnels, mud (surprise!), water and pure energy. Let me tell you: I just love this event!
Turns out that autism moms and dads love this day. We aren’t afraid of getting dirty, and what’s even better is that these efforts benefit TACA. These events don’t count on athletes, but people and teams who just want to show they are Gladiator tough.
Like most things (think recent OC Half Marathon), I don’t think I’d do them if it wasn’t for TACA. I dedicate at least 60 hours of my week to TACA. Usually after school Jeff will be in tow smiling because we always have fun.
This event came as a great gift from TACA board member Chad Fitzsimmons. Chad met the organizer via Jack FM and he wanted to involve a charity. Chad is always thinking about TACA and the families we serve.
Who is this original Gladiator you might ask? Well the one and only “Nitro” from the incredibly popular Gladiator TV show. Dan Clark is his God-given name, but Gladiator Nitro is what he is! What he has accomplished is pretty incredible. He turns parks into a mud obstacle and a one-of-a-kind rock and roll adventure race.
The “before” picture with Johnathon Schaech, Dan Clark & lucky me
As usual I got signed up for the first one last year because it was what I needed to do. Last year it was a 5k, and that’s pretty much what I ran a few times a week, so I knew it would be easy. Until I then looked at the website (1.)
It turns out Dan “Nitro” Clark wants everyone to feel like they are on that Gladiator show, even if just for a day. Filled with fanfare and well ….challenges! The final product is self-confidence and pictures that are more than Facebook worthy.
Challenges included walls to scale in many shapes and sizes, ropes to climb, mud tunnels to conquer, and obstacles that look like the Navy Seals’ concocted. Did I mention I’m 47 and not in the best shape? My partner this year was a long-time TACA friend, actor and brilliant writer Johnathon Schaech. He was an awesome partner and I am 100% sure without his help I wouldn’t have made it through the obstacles attempted. We spent a lot of time laughing!
What’s pretty amazing to me is not only how unique and fun this event is but the philanthropic principle behind it. Since day one, Dan has been adamant about making this day a memorable experience for all involved. He also wanted to involve a charity to benefit in every facet of the day. We are extremely excited about being part of these events but even more thrilled with a partner like Dan and his team. They make our weekends fun and in many ways helping TACA and the families we serve.
The “after” shots of Johnathon & I – there was a lot of mud and pride
In my autism journey, I’ve handled a lot of poop – so what’s a little mud? What’s even better – I can now say I am Gladiator tough., twice! I can promise you, there will be a third and more times after that.
Now, here is your chance to sign up! Gladiator events are popping up across the U.S. It is a great way to build team, fundraise for TACA and have some awesome pictures to show your participation and becoming Gladiator tough! Who’s in?
References:
http://www.tacanow.org/events/gladiator-rockn-run/
http://www.gladiatorrocknrun.com/what.html
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Meet Ethan & the concept of recovery
Sometimes somethings don’t need a long description or introduction. Meet Ethan. He’s in second grade. He used to have autism.
TACA is matchautism.com?
By Lisa Ackerman
Dating? I never thought that this would ever be a title for a TACAnowblog. Somehow I knew the issue would come up some day, but how?
First, I am so happy to share this story. I know that the window never closes for our kids. Intervention can help at any age (1.)
In October 2011, a mom came to us looking for help for her 20-something year old son. He was making progress, but struggling with some major issues. The primary issues were on-going seizure activity, depression, and short term memory problems. It all starts with feeling well and he just wasn’t.
It had been some years since their last doctor’s visit, and due to personal circumstances, it wasn’t something she could do. Based on her application, TACA was able to fund her medical scholarship to help her son’s needs (2.) The scholarship included time with a doctor that would work with her, her son’s medical history, and review of current issues. They devised a treatment plan that only lowered her sons ATEC score by three points but made a dramatic difference.
Before I get to the good news – What’s an ATEC? The Autism Treatment Evaluation Checklist (ATEC) is a great tool for clinicians and parents to evaluate treatments based on autistic symptoms. ATEC scores collected from thousands of families yield important clues to common treatments for ASD (3.) Parents can run this test and score their child based on treatments and/or annual review of their child’s progress. At TACA, we consider running annual ATEC scores on your child a good practice.
Now – let’s go back to this case. The outcome for this one kid – at age 20-something was huge. Instead of suffering from multiple seizures each day, he now goes 8-10 days without a seizure. His appetite has improved and he has gained some much needed weight. After his appetite improved, he began sleeping more and in just a few months, he started feeling much better. Not only have the depression and short-term memory challenges greatly improved, mom says that he is speaking more and constantly surprising her with his knowledge and wisdom.
But wait, there’s more. The most impactful significance for this young man was simple: a first date and a first kiss. While many young men take this step into manhood for granted, we know this can be a huge struggle for some on the autism spectrum. Mom’s email to update us at TACA had me over the moon with her son’s progress. I just had to share:
My son has greatly improved in many areas, especially socially. The biggest change we made is fine tuning his supplement amounts based on new lab results. I also followed doctor’s orders and made sure he gets enough rest and not pushing his energy levels.
What is exciting is my son has taken a new interest in dating and this month he received his 1st kiss. He is still doing well on strict SCD Diet.
In the past month, both friends and relatives have commented on his more outgoing personality and better ability to communicate on the phone. He has grown into a strong, healthy young man.
Now we have more laughter in the house. And I have a son that is now dating. Thank you TACA for our family grant. With sincere appreciation – Janice
While I know we all want our kids to have significant relationships, please don’t look to TACA to start an on-line dating service for our kids as a new program! We are just extremely excited to share this great outcome! For this family, updated treatments and doctor review made a big difference. Again, autism is truly treatable and the window for some of the families we serve DOES NOT CLOSE!
Proud mom Janice and her son
References
1) The window never closes: http://www.tacanow.org/family-resources/does-the-window-ever-close/
2) Hope by the numbers http://tacanowblog.com/2012/01/11/hope-by-the-numbers/ and Family scholarship program http://www.tacanow.org/about-taca/family-scholarship-program/
3) ATEC: http://www.autism.com/ind_atec.asp
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A Mother’s Love
by Lisa Ackerman
In honor of mothers day I searched for a poem to encapsulate the love we have for our kids. A popular and timeless poem describes a bit of how I feel on this journey. Perhaps you moms out there feel it too.
You work so hard. You care so much. We are sisters in the singular goal of loving, caring and healing our kids.
My one wish is for all of you moms (& some of my single dads friends doing both roles) to have a blessed and beautiful mothers day. Find that sweet spot or God willing a full day of joy. You work so hard and deserve this day.
—–
A Mother’s Love
A Mother’s love is something
that no on can explain,
It is made of deep devotion
and of sacrifice and pain,
It is endless and unselfish
and enduring come what may
For nothing can destroy it
or take that love away . . .
It is patient and forgiving
when all others are forsaking,
And it never fails or falters
even though the heart is breaking . . .
It believes beyond believing
when the world around condemns,
And it glows with all the beauty
of the rarest, brightest gems . . .
It is far beyond defining,
it defies all explanation,
And it still remains a secret
like the mysteries of creation . . .
A many splendored miracle
man cannot understand
And another wondrous evidence
of God’s tender guiding hand.
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Guest Blogger: Andrew Zimmerman
In this photo: the amazing Zimmerman family with TACA Founder
(NOTE: This is a feature from the new TACA Autism Journey Guide – Volume 2. For more information please see: http://www.tacanow.org/about-autism/autism-journey-guide/ )
Dear Parents,
I am writing this to encourage you to consider biomedical interventions for your child. I hope many other people encourage you as well, because biomedical interventions are life changing. Working with a physician trained by the Autism Research Institute or MAPS www.medmaps.org , parents can help their kids with many health related issues like diarrhea, constipation, sleep, ADHD, anxiety, depression, tics, speech issues etc. You may be skeptical that these treatments can affect so many areas…but I am living proof that they work!
I have to be honest with you here. Biomedical interventions can be hard. This I know firsthand. But what I also know firsthand is that biomedical interventions are worth it! Before “biomed” I was physically weak and exhausted all the time. I couldn’t focus and had regular acid reflux. Life was, for lack of a better word, disinteresting. The main feeling I had was apathy. Nothing mattered to me except video games. This extended to having friends, doing fun things, and even eating. I never paid attention to my future. In fact, I paid no attention to anything, except gaming.
Then one day, for seemingly no apparent reason, my mom just took all the wheat and dairy out of the house. I did not know why, neither did I see it coming. There was no end in sight to my mom’s medical madness. There were pills to swallow, lab tests, and even shots. I made things incredibly difficult for my mother, and I don’t know how or why she kept pushing through, but she did.
Today, I am strong and healthy, and all of my health issues have practically disappeared. There is no way I would have believed it, but now that I have lived through biomedical interventions, my life has really taken a positive change. I’m energetic and athletic, and even received a blue belt in Jujitsu at 15. My focus has gotten so much better. My weight has doubled in 4 years, mostly due to muscle mass increase. In addition, I now have friends and care about life. I feel like I can make a difference.
Here is what you should know. For most people, biomed is not a short term, quick fix. If you want to get results for your kid, it will take some work – for you and for him. If you are in, you need to be in 100%. While the effects of biomedical treatments can be apparent in short periods of time, often results are gained slow and steadily.
There may be times when you will have doubt. You might be uncertain that biomed is helping your child. You might question whether your child can stick with a special diet – especially if he is a big wheat and dairy fan. You may wonder if other families judge you. You may worry about how much it will cost. Know that if you face these challenges or any others, there is a community of amazing people in TACA who are ready and able to help. They know the uncertainty you are feeling and will support you through this process.
Are biomedical interventions easy? Well, nothing worth doing is easy… and biomedical interventions are very worth doing. The hardest part by far is the first 3 months because it requires a lot of lifestyle change. During those three months, you and your child will find out what you are made of. Perhaps your kid is not 100% dedicated to this cause. What is important is that you ARE 100% dedicated, and that you inspire your child to feel the same. As a result, you may end up bribing your child to keep them on track. My mom paid me $10 per month not to complain and stick with the program. How you motivate your kids is up to you.
Biomedical interventions may feel like harsh tasting medicine. It can be hard to follow the directions and swallow. But if you keep at it, you will get positive results. With thousands of recovered kids, including myself, biomedical interventions have a history of doing its part. Are you going to do your part?
Well? Are you ready?
Sincerely,
Andrew Zimmerman
Author of What Is My Mother Doing To Me? A Teenager’s Journey To Recovered Health Through Biomedical Interventions
http://www.amazon.com/What-Mother-Doing-Biomedical-Interventions/dp/1452883742/ref=sr_1_3?ie=UTF8&qid=1336165442&sr=8-3
—–
Editors note: Andrew is the son to Debbie Zimmerman – TACA’s super coordinator in Hawaii. Andrew and his mom are a huge inspiration and help to TACA and the families we serve!
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GPS Technology Enhances Quality of Life for Autism
due to wandering and safety issues
GTX Corp (OTCBB: GTXO), the leader in customizable, 2-way GPS tracking location based solutions has been granted another utility patent, adding to the company’s growing IP portfolio that includes 11 issued patents, 5 patents pending and 34 U.S. and 28 foreign patents under its license. The multi-patented GPS technology platform will also soon serve as the foundation for products designed to help the millions of families affected by autism, as a result of a partnership between GTX Corp and Talk About Curing Autism (TACA).
This new Patent 8,154,401 B1 titled “System and Method for Communication with a Tracking Device” protects many of the vital communications with the GTX Corp backend processes that are currently being used daily by the Company’s licensed enterprise partners and consumers, enhancing the Company’s barriers to entry in the growing $13 billion location based services industry. “This new patent has 30 claims, including 2 independent claims. One of the independent claims is directed to a tracking device with remotely configurable settings and the other independent claim is directed to a method of communicating configuration data to a tracking device. This patent further strengthens the Company’s already extensive IP portfolio and overall value,” said Larry E. Henneman, Jr., Registered U.S. Patent Attorney.
Continued technological innovation and partnerships such as the one between TACA and GTX Corp advances the reality that healthcare is no longer limited to what happens in the hospital. Healthcare and safety is becoming integrated into our phones, our homes and even our clothing with the convergence of digital and medical technologies. “We are excited to partner with GTX Corp and to begin providing the thousands of families we work with, technical solutions for those diagnosed with autism who wander from their families. This partnership will address the serious safety concerns for the many families we serve,” stated Lisa Ackerman, TACA Founder.
“With our award winning multi-patented GPS Smart Shoe and patent-pending Alertag we have been at the forefront of connected health for years, providing new levels of functional oversight, security and peace of mind to a variety of audiences and needs,” commented Patrick Bertagna, CEO of GTX Corp. “We look forward to developing and bringing to market new, innovative products that both satisfy the ever-increasing consumer demand for location based solutions and that will help support the families challenged with a special needs child.”
Wandering is an enormous issue for the autism community. Recent research concludes that 48% of children diagnosed with autism wander and are susceptible to injury, death and other safety issues. This partnership will offer families affected by autism a solution for helping track and potentially assist in keeping their loved one safe.
Recently analyst firm TNS said a majority of people around the world were now recognizing the value of sharing their location. Given the report, almost one fifth, or 19 percent, of the world’s mobile users are already using location based services, and more than three times that (62 percent) aspire to do so very soon. With the expectation of this market seeing sizable growth over the next few years GTX Corp is positioning itself well by continuing to build a strong intellectual property portfolio and expand its strategic relationships.
In addition to the GPS Technology Collaboration also includes the Code Amber Alertag
Code Amber Alertag is a discrete ID tag that fits on your keychain and provides access to vital life-saving information in case of an emergency.
Over 100,000 people die every year from preventable medical errors. That makes this the fifth leading cause of death in the United States. Over 90% of those errors could have been avoided if the EMT or doctor had quick and easy access to vital information about the patient when first treated.
For more information please see http://codeamber.org/taca.html
SPECIAL NOTICE FOR TACA FAMILIES:
We are looking to identify test families for the GTX products. If you are interested please contact Roxanne.hall@tacanow.org. Please provide your name, phone, address, age of child and their diagnosis. Please also indicate how many times your child has wandered.
If you would like up to date information on where you can buy this product please contact Roxanne.hall@tacanow.org. We will add you to the list of pre-release information.
Code Amber Alert tag is available today – for more information please see http://codeamber.org/taca.html
Together, our goal is to help families with serious issues such as wandering and safety.
FOR MORE INFORMATION:
Visit online: www.gtxcorp.com www.facebook.com/gtxcorp www.twitter.com/gtxcorp
Product and licensing e mail – info@gtxcorp.com
Public Relations contact Suzy Ginsburg (713) 721.4774 suzy@gcomworks.com
Investor Relations ir@gtxcorp.com
It’s a marathon. Not a sprint.
I’m not an athlete. I never have been. Not even in my school days.
Over the last 12 years I knew that I’d do just about anything for TACA. When the TACA development team (love Violette, Trang & Ana) brought the OC marathon to me in 2011 I laughed and quickly added don’t ask me to participate! I was first to let them know that I run no more than 3 miles at a time. Maybe 8 miles total on a good week. My motto “I only run when being chased.”
Well no was not an option. So I signed up. And I am glad I did. So did many on team TACA.
There was some interesting discoveries for my first race:
1) Who knew the first mile of a race was a strip tease? There were hundreds of shirts, sweatshirts and other garments in the first mile left by runners.
2) It was really cool to run in the streets I usually only drive on.
The cheer parties were great. Absolute strangers encouraging you to go on. It made me cry. But mostly it encouraged me.
3) The signs by spectators were hysterical. My two favorites signs:
“Your training lasted longer than Kim’s wedding”
“Make this mile your bitch”
There were many others.
My first 8 miles were just simple. No fuss just a simple jog. My 8-10 miles were pretty ugly. Team TACA had a cheering station at mile 12 that lifted me up in a nice way. They made me feel like a hero when I felt like a zero.
What’s cool is there was 200 runners making there way in the 5k, 1/2 marathon and full marathon running for autism. The wonderful part was that about 80% of us were doing it for the first time. That means you reading this blog could do it too.
The training was not hard. 225 miles in training since Jan 1 added up fast. The best part Jeff started running with me 5k’s each week.
The only thing I lost was that muffin top. I’d encourage other TACA moms and dads to look at Train4Autism. They have a plan to get you thru the race. Get healthier. Do it for you. Do it for your kids. Just do it (thanks Nike.)
My Twitter post for me encapsulated how I felt at the end of the 13.3 (course was longer than 13.1): Ran OC 1/2 Marathon. The entire time I thought about knowing kids with #autism work 100x’s more than my sorry run.
It’s true. Individuals with autism run a marathon everyday.
Resources:
www.train4autism.org
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By Holly Bortfeld
DSM-5 Draft Criteria Open for Public Comment
Mental health diagnostic manual available for final online comment period
The DSM – Diagnostic and Statistical Manual of Mental Disorders published by the American Psychiatric Association – is like a giant catalog of diagnoses. It’s the “bible” that lists the criteria for each disorder.
DSM-IV-TR is the current version in use now. Today it includes PDD-NOS, Asperger’s, and Autism. The most notable diagnostic criteria difference between kids with Asperger’s and Autism is that there was no marked delay in language early in life. I know a lot of kids with Asperger’s diagnoses that did have a marked delay. The criteria isn’t perfect, to be sure.
Asperger’s Syndrome does have diagnostic differences from “autism” but in 2013, the new version – DSM-5 will remove all the variations and leaving us with just one diagnosis: Autism Spectrum Disorder.
In recent studies, these proposed changes are said to disqualify 25-65% of people with an ASD diagnosis. Make no mistake, this is the biggest attack on our community to date. What will you do if YOUR child loses their diagnosis, and therefore services? You need to ACT TODAY.
The DSM5 Committee Press release says:
DSM-5 Draft Criteria Open for Final Public Comment May 2nd through June 15th, 2012. This commenting period marks the third and final time DSM-5 draft criteria will be available for your feedback. Following this period the site will remain viewable with the draft proposals until DSM-5’s publication.” Please note: You must register before you can comment, then you have to go to the specific “disorder” you want to enter your comment on (Autism Spectrum Disorder).
http://www.tacanow.org/news/dsm5-last-call-to-action
We strongly urge ALL OF YOU to go and comment about the proposed changes – this is your ONLY chance to say your peace.
Read more at http://www.tacanow.org/family-resources/autism-vs-aspergers-syndrome-diagnosis/
http://www.tacanow.org/blog/diagnostic-criteria-changes-what-your-family-needs-to-know/
The Big Time
Guest blogger: Janice Kern, TACA North Dakota
Small town USA is a buzz in Spring with sports teams making it past district competitions, sectionals or regionals in order to make it to ‘The Big Time’ — the State Tournament. Where we live, believe it or not, we are now sending a third team to a state tournament in one school year. This is a time of tremendous excitement in small towns.
Businesses stop everything to be ready out on Main Street to cheer as the team bus drives by before they head out of town for the state tournament. School children make posters and line up on sidewalks to cheer and wave at the bus. For opening round action, the game will be shown in the school auditorium. This ‘Big Time’ is a very big deal. And I love almost everything about it – almost.
What I don’t love is that all this excitement brings about tremendous anxiety for my son who has autism. While his class is heading out to the sidewalk to cheer for the team, Charlie will be frantically concerned about somebody remembering to give him his noise-canceling headphones because he has severe sound sensitivity. Sadly, he won’t be able to explain this issue to people. And of all days, today is the day he has a substitute teacher and I wonder if she knows about the headphones. Comfort for Charlie is found in routine and consistency. When I hear that a “Parade” is planned with the championship teams walking through the school hallways so students can cheer, I cringe.
After experiences with past teams making it to state tournaments, I learned to gear Charlie up for the parades and cheering. I made sure he had his headphones in his backpack, and if it seemed like the day might be a disaster, I made sure to show up in case an early dismissal was necessary.
I know that these state tournament bound teams have had months and even years of practice to get to where they are today. Practice makes perfect, right? Thanks to the continued success of several teams in our school, Charlie has had many opportunities to practice cheering them on next to his classmates. This week, while the entire community is cheering on the girls’ basketball team headed to the state capital for the state tournament, I am cheering too. Charlie was able to have his school day disrupted, be on the sidewalk and cheer on the team as they left town on the bus. Included with the bus was a parade of vehicles which included a fire truck complete with a siren. It has taken years of therapy, treatment, and education in order for him to have stood on that sidewalk. In a family with autism, we consider this ‘The Big Time’.
My hope is that more kids can make it to the Big Time. Charlie is not recovered from autism and has many symptoms of the disorder. But he is making it. And we’re cheering. And for a little while, the whole town is cheering at the same time. Besides cheering for that team and their amazing victory, I always look at Charlie seeing him cheer and my heart starts to sing. This is ‘The Big Time’ for us in so many ways.
