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Vacation with Autism

August 12, 2014

vacation

 

 

 

 

 

 

By Ali Hoffman – guest blogger

I love this post from the Onion, Mom spends beach vacation assuming all household duties in closer proximity to the ocean (1.) This article rings true to many of us with smaller children. Long gone are the days of reading a few books the week of vacation as we are lucky to read a few pages. Bringing a chair to the sand may truly be a sign of optimism as building sandcastles, boogie boarding, and kicking the soccer ball around don’t allow sitting for the most part.

As a parent of a child with autism, I take this post a bit further. I would add assuming all household du-ties and the role of teacher, occupational therapist, speech therapist, nutritionist, and ABA provider as well. Parents in our situation probably smile at reading it but it’s true. As I packed the car for our week-long trip to the Jersey shore, I wondered why we don’t own a Suburban. I needed to pack all the extras to make sure I had everything I might need for Matthew while we were gone. The ever growing list includes: weighted blanket, music therapy pillow, assortment of reading materials for our proud pre-reader, favorite puzzles, a laminated schedule to help provide structure to the day, and an abundance of gluten free and casein free food. I am sure I will forget something. As I packed the car, my husband bet me I couldn’t make it fit but my years of experience with puzzles and Tetris allowed me to prevail and we were on our way.

I know many parents of kids with special needs who don’t vacation. For them, they’d need an RV to bring all the things they might to ensure their child being happy while away. They share that it’s too hard to take their child out of their known environment. The fear that it will be too hard outweighs the possible great that could come from a getaway. I totally get and respect it. What I’ll share is that in our experience, vacationing with a child with autism is fun, hard, emotional, and stressful which is the same as living with our amazing Matthew at home. In the past few years, we’ve increased our travel. We’ve traveled to Disneyworld, the beach, and recently to Boston, MA. What we’ve learned from our travel is that Matt doesn’t mind big crowds, loves big cities, enjoys rides big and small, and can walk for over 5 miles in a day. We wouldn’t have learned those things without traveling. His smile during these activities is amazing and I’m so grateful we push our comfort zone. I reflect often that if Matt was verbal, he might bound down the stairs on a weekly basis in the summer begging us to go to Six Flags for a coaster fix or to graduate to surf lessons from his favorite boogie board. The fact that Matt is minimally verbal forces us to try these activities without knowing if he wants to do them or not. You learn as you go. Sometimes it’s a great victory and other times it is not. It’s important to keep trying because you may discover new interests and fun along the way.

In the pursuit of fun, you will sometimes experience turbulence. These bumps in a trip or outing will test you. Our strategy is to try, be flexible, and pivot. We’ll change the day’s plan, add in a nap or iPad rest period, etc. This means that you might not get to see the fireworks at Disney, walk the beach under the stars, or eat dinner past 6:30 p.m. but it’s okay. If all those adjustments fail, you can always go then pull the emergency cord and go home. We left our beach trip a day early this year. Matt had done a great job but hit a wall. Despite packing everything, trying everything, he hit a wall and was hysterically crying. I paused in that moment. I watched him and realized that it was all out of his control. I saw the fear in his eyes that he was so unhappy and out of sorts but “wanted to stay at the beach.” I held him in my lap with a giant bear hug and after a long while, calmed him. I told him that we were going to go home and sleep in our own beds. I explained everyone was going home the next day so we were just getting a head start. I stressed to him that we would celebrate the next morning by getting our favorite donuts and have a pajama day. I got him calm and we went home. He fell asleep in the car within minutes. He never sleeps in the car.

On the drive home, Mike and I spoke softly to one another about how great the trip was despite the bumps. I told him that one or even several tough moments do not define a trip. We reflected on our June trip to Disney and that we had a great time despite the fact that Matt got so overheated we had to leave Magic Kingdom in a hurry. He bounced back the moment we got him to the hotel and into the pool. Our recent trip to Boston provided a challenge of fasting prior to a medical test. Matt embraced lemon sorbet and walked around Boston with a huge smile. For our family beach trip, he had the best time boogie boarding, spending time with family, eating pizza, and walking a little more than a mile into town. I list out the great moments because that’s how I choose to remember the experience. It’s rare that the bad outweighs the good in my opinion. Mike smiled at me and told me he loved that about me. He admired that I focus on the positive. I thanked him and shared that I developed my ability to embrace the pivot so I could move forward after Matt’s diagnosis. All that stress about how things should be turned into how things might be. My plans converted into guides. I go into all situations excited, nervous, organized knowing that if I need to we’ll regroup, pivot, and try something else. If that doesn’t work, we’ll pull the emergency cord and it will all be okay.

Matt slept in the following day and walked around our quiet house. He was calm, happy, and at peace. He brought us his favorite books and pictures. Mike and I equate it to when you are at a work meeting trying to be on your best behavior even when you truly want to let it all hang out. Matt tries so hard to keep it together, be around people, and join in sometimes. I think that’s amazing. But sometimes you need to let it all hang out and the place where Matt feels most comfortable doing so is at home.

For me, I’ll continue to pack up the scooters, legos, board games, weighted blankets and the most ex-pensive GFCF treats you can buy and realize that it’s not a guarantee that things will go without bumps. You can buy a ticket to fly somewhere knowing that you can survive a two hour flight in the worst of circumstances but realizing you may get lucky and have a smooth and happy flight. When you arrive at your destination, soak in your moments and if you want, write them down to remember into the future. I left Disney with many notes but my favorites were watching Matt enjoy viewing the giraffes from our balcony, roller coasters, water slide at our hotel, and Mike and I drinking wine during every sunset. I left our beach week with Matt enjoying his cousins and grandparents, boogie boarding at the beach, and kicking the soccer ball with us. For me, I read a book, enjoyed a great dinner with my sister and brother in law, and spent time with my niece and nephew. I’m grateful to have these memories and look forward to making more again soon.

Matt Summer Vacation 2014

References:

http://www.theonion.com/articles/mom-spends-beach-vacation-assuming-all-household-d,33431/

 

Other blogs by Ali Hoffman

http://tacanowblog.com/2013/11/15/united-we-stand-divided-we-fall/

 

Editors note: thank you Matt’s mom for the great blog and volunteer efforts on behalf of families living with autism. I am honored to work with you for a common goal. I greatly appreciate your honestly and humor to educate and support. You always inspire and make me smile. ~ Lisa

 

Listen, Learn & Take Action for Your Child

July 28, 2014

Janice Kern, TACA Conference Coordinator

conference-photo

TACA hosts events every week somewhere in the country. There are coffee talks, family picnics, TACA Meetings, Autism Learning Seminars, Family Hikes, TACA Birthday Parties and the list goes on. It’s a fact that TACA has some of the most creative volunteers you’ll ever meet. If they can dream it, they will plan it and invite families affected by autism to join them. Added to this list of events is the Real Help Now Autism Conference.

conference2TACA will host three conferences in 2014. I was very fortunate to attend the Real Help Now East Coast Conference in Philadelphia on April 26th. I was among many TACA parents getting help and giving help. If you haven’t been to a TACA conference, you are missing out and I hope you can attend in the future. If you’ve been there, you know what I’m saying. TACA on your laptop is a great resource but up close and in person, it’s a life changer.

conference-photo5Join parents and professionals like yourself at the next TACA conference. There are two more locations this year. Meet us in Costa Mesa, California or St. Paul, Minnesota. Both locations are where TACA holds meetings and events with TACA chapters. The volunteers who coordinate the chapter efforts will help with conference efforts and would love to meet you in person.

Right now, there are early bird registration rates for both conferences. Take advantage of these super low conference registration rates of $30. This price increases soon. Included in the registration is coffee all day long (wake up!!), lunch, TACA support with TACA mentors, your choice of two conference tracks to follow, and the best speakers with the latest and greatest information. Something that attendees especially appreciate that is unique to Real Help Now is the Conference Workbook. This workbook (guaranteed to each pre-registered attendee) contains every presentation for you to follow along as each presenter shares information with you. You can take notes and take it home as a resource and reference.

conference-photo4There are two more TACA Conferences coming up in 2014. Hopefully you can attend one of them. What if you can’t? Unforunately, TACA can’t host a conference in every city or every state. There is plenty of information to go around so don’t be afraid to send one of your friends the conference information even if you can’t attend yourself. There will still be support and information for you with the TACA Mentor Program, TACA Livechat, TACA USA Yahoo Group, Social Media with TACA’s FaceBook page and the content filled website at tacanow.org.

Click here to print out or post our conference flyers. Share them with providers in your area, post them on your social media sites and help TACA reach more families so that their children can be helped to be as healthy as possible.

Ready to register?

Register for Real Help Now West Coast on October 3rd and 4th in Costa Mesa, California: http://www.realhelpnowconference.org/west/register/

Register for Real Help Now Midwest on November 8th in St. Paul, Minnesota:

http://www.realhelpnowconference.org/midwest/registration/

Click here to print out or post our conference flyers. Share them with providers in your area, post them on your social media sites and help TACA reach more families so that their children can be helped to be as healthy as possible.

The Perfect Outfit

July 21, 2014

Janice Kern, TACA Mom and Dang Chic

Charlie karate kick butt

There was a special event planned for a particular evening. As with most special events, I wanted to pick an outfit for the occasion. Fortunately, a package had arrived several days before so I didn’t have to think too hard about what to wear.

The occasion was our son, Charlie’s, junior Black Belt TaeKwonDo test. He started TaeKwonDo at the age of 8. He required special one on one instruction from very devoted teachers due to the many challenges brought about by autism. After the first 15 minute session, we were hopeful that he would be invited back. We knew the instructor might determine that this was a challenge too great to take on. We were thrilled with the invitation to bring him back for another class. It was a huge effort each class. Charlie earned his white belt (first belt level) along with his special uniform and we were happy. We thought maybe that would be the end of Charlie’s TaeKwonDo career. We were very thankful when the instructor let us know to bring Charlie back for another session. In order to earn his orange belt, he needed to take a test. It was a huge challenge. He cried through most of the test. He needed to wear a snowboot in order to break his first board. But he got through the test and we were proud of him. He wasn’t proud at all. He couldn’t get over the anxiety of the experience. But we continued to another session of private 1:1 taekwondo classes. Several more belts were earned similarily to the orange belt. There was a lot of anxiety and tears. However, in the last 2 years, Charlie has made a leap in progress and the anxiety and tears have been less frequent. A year ago, it was determined that Charlie would be given the opportunity to work toward testing for his junior black belt. He was able to join the regular TaeKwonDo classes with the large group of kids leading up to testing date.

Finally, it was junior black belt test day. Charlie was very well prepared. For the first time, we had marked the test date on the calendar so that Charlie knew the test was coming. In years past, this caused greater anxiety so we avoided making notes on the calendar. Charlie has 3 brothers who know very well the hard work required to get to the point of testing for junior black belt so were all excited to watch the test.

Test day arrived and I needed to be ready to be supportive of his huge effort. I also wanted to be ready to celebrate, personally, what we have given of ourselves in order for Charlie to get to this day. I wanted to dress the part.

I opened my package from Dang Chics and knew right away this shirt was perfect for the occasion. The tag on the shirt was such a great way to describe a mother whose child is affected by autism. Hot Mom, Gives A Lot, Schedule Crusher were three of my favorites. This black belt test is something Charlie has earned and worked so hard to achieve. But what I have done for him to have made this day happen makes me feel like one tough dang chic. We have met and come to know many people who have helped Charlie along the way but we’ve also met plenty who didn’t share in our hope for Charlie’s future. Wearing “Dang Hopeful” on my sleeve while watching Charlie perform the required moves, kicks, oral recitations and board breaks was absolutely the best outfit I could find for the occasion.

Dang Chics has created a T-shirt especially for moms like me. I like it so much and I love that a percentage of sales goes back to the organization that keeps helping our family: Talk About Curing Autism. There are other businesses that support TACA and that’s why you will see me wearing Oakley sunglasses on my sunny days (while I’m wearing a TACA shirt) and purchasing supplements from the companies that give back to TACA. These amounts just from my few purchases add up to a small amount. But for all the Dang Chics out there, this adds up to helping families. Like mine.

Charlie passed his test. He is now a junior black belt. And in all the pictures from that special day, I proudly have ‘Dang Hopeful’ on my sleeve.

 

 

Reference:

http://www.dangchicks.com/product/new-arrivals/dang-hopeful-autism-short-sleeve-tee/

Update: Stem cells and autism

July 14, 2014

in the news

By Lisa Ackerman

As promised, we stated we would update you on the latest in stem cell research. We have written about Dr. Chez’s stem cell study in past TACA blogs (1.)

As a reminder, we know stem cell therapy offer treatment solutions for many other conditions (such as leukemia, lymphoma and other serious medical issues.) An FDA pilot study will look at stem cell therapy from cord blood & autism as a possible solution for treatment. The timeline for this pilot study is 1-2 years. Dr Chez’s study initial results should be out sometime before the end of 2014.

A new study is about to launch at Duke University with lead investigator Joanne Kurtzberg are trying to find out whether stem cells taken from frozen cord blood can improve autism symptoms (2.) Experts caution that the trial is premature. Here is what they had to say:

Early animal studies have shown that stem cells isolated from umbilical cord blood can stimulate cells in the spinal cord to regrow their myelin layers, and in doing so help restore connections with surrounding cells3. Autism is thought to result from impaired connectivity in the brain. Because of this, some groups of children with the disorder may benefit from a stem cell transplant, Kurtzberg says.
But others are skeptical of the approach. Autism is a complex disorder with many possible causes. Also, it’s unclear how stem cells derived from cord blood can improve connections in the brain. Given these important caveats, it’s too soon to conduct a test of this scale and investment, some experts say.
“It’s probably premature to run large trials without evidence that they have a therapeutic effect that [we] understand,” cautions Arnold Kriegstein, director of the Broad Center of Regenerative Medicine and Stem Cell Research at the University of California, San Francisco.

We will be watching new developments on both studies referenced in this blog and share the updates with our members. We are excited about the potential of stem cells for candidates who can benefit from this procedure. There is still so much to learn before this is a readily accessible, insurance paid procedure for those in need.

research

References:

1) http://tacanowblog.com/2012/10/08/stem-cell-update-in-the-news/ and http://tacanowblog.com/2012/09/05/stem-cells-and-autism/
2) http://sfari.org/news-and-opinion/news/2014/experts-balk-at-large-trial-of-stem-cells-for-autism

TACA Facts – tips for families living with autism

July 9, 2014

TACA Facts – a new series in collaboration with AUTISM LIVE

We are very excited about a new video series in collaboration with our friends at Autism Live. In this blog there are four new shows to share with families and answers to their frequently asked questions.

TACA FACTS autism-live-logo

 

Introducing: TACA Facts

This is an introduction to our new series “TACA Facts” sponsored by Autism Live. We’ll answer the most common questions for families living with autism in 2-3 minute segments.
What the introduction here: https://www.youtube.com/watch?v=_XvvOhr5br0

 
   
TACA Fact: Can children with autism recover?
https://www.youtube.com/watch?v=UPbshoOaBG0
Show references:

- NIH 2013 autism recovery study: http://www.nih.gov/news/health/jan2013/nimh-15.htm

- Family stories: https://www.tacanow.org/family-stories/

 
TACA Fact: How do I know if a treatment is working?

http://www.youtube.com/watch?v=dHTO6H7-xW0&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa 

Show references:

– It is important to document. Tips on how to document and perform an ATEC test: https://www.tacanow.org/family-resources/autism-evaluation-checklist/
– Documentation samples: https://www.tacanow.org/family-resources/sample-daily-calendar/

   

TACA Fact: Why aren’t Autism Treatments covered?
http://www.youtube.com/watch?v=KC_WCt3qFAc&index=6&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
- Who pays for what? https://www.tacanow.org/family-resources/who-pays-for-what-a-guide/
- Insurance Reimbursements: https://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/
- On a budget series: https://www.tacanow.org/family-resources/autism-on-a-budget-series/
- American Academy Pediatric Standard of Care for Autism:
https://www.tacanow.org/family-resources/aap-standards-of-care/
 

 

 

TACA Fact: Why are Specialists so expensive?
http://www.youtube.com/watch?v=k_OhYXBptjU&index=5&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
- Who pays for what? https://www.tacanow.org/family-resources/who-pays-for-what-a-guide/
– Insurance Reimbursements: https://www.tacanow.org/family-resources/health-insurance-coverage-on-a-budget/
- On a budget series: https://www.tacanow.org/family-resources/autism-on-a-budget-series/
- How to prepare for an appointment: https://www.tacanow.org/family-resources/how-to-prepare-for-a-maps-doctor-appointment/
- Things you can do before your appointment: https://www.tacanow.org/family-resources/what-can-i-do-before-seeing-a-maps-doctor/
 
   
TACA Fact: What are the top 3 mistakes autism parents make?
http://www.youtube.com/watch?v=MOeBKdiBIvA&index=4&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
- Autism Journey Blueprints: https://www.tacanow.org/family-resources/autism-journey-blueprints/
- Find a meeting near you: https://www.tacanow.org/local-chapters/
- Get support: https://www.tacanow.org/contact/
- Find a free parent mentor: https://www.tacanow.org/about-taca/parent-mentor-program/
 
 
TACA Fact: How do I get My Partner on board?

http://www.youtube.com/watch?v=cWdRLDvwEE8&index=3&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
– Staying connected: https://www.tacanow.org/family-resources/after-the-autism-diagnosis-staying-connected-as-a-couple/

 
   

TACA Fact: There are no specialists near me!
http://www.youtube.com/watch?v=0QyPMRz0gfo&index=2&list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

Show references:
- Traveling tips: https://www.tacanow.org/family-resources/traveling-with-your-children-with-asd/
- Find a free parent mentor: https://www.tacanow.org/about-taca/parent-mentor-program/
- Ask for recommendations from other families like yours: Private TACA USA Yahoo Group www.groups.yahoo.com/TACA-USA (membership required)
 

This is the Autism Live landing page where we will share all future program segments: http://www.youtube.com/playlist?list=PLzpc1lUvttW9p3hfqDE4f885Xcuo8b7oa

 

Other future TACA FACTS topics include:

  • What if my child is a non-responder?
  • Talk to me about puberty.
  • I’ve done everything, now what?
  • What are some exciting new treatments?
  • Everything costs money! HELP!

Please remember: TACA is a parent support organization that provides free information and resources to families. Talk About Curing Autism (TACA) provides general information regarding medical research, treatment options, therapies and nutrition to the autism community. The information comes from a variety of sources and is not independently verified by TACA. Nothing presented in print or at meetings should be construed as medical or legal advice. Always consult your child’s doctor and therapy team regarding his or her individual needs.

Got a question? Please send it to lisa@tacanow.org

Need help now? Please wait FIVE MORE YEARS!

June 26, 2014

By Holly Bortfeld

The US Government has spent $1.7 Billion dollars in your child’s name under the Combating Autism Act (aka The CAA). Do you feel your child has benefitted from any of that money?
“How about all of the new treatments that money created?” Nope, not one.

“How about the deep cuts in prevalence?” Nope, that went up over 7000% (almost 15,000% if you start when the government started “watching” autism). And average age of diagnosis went up too! Cases prevented? 0.

“Ok, what about all the improved services, reduced waiting lists, new residential facilities, supported job coaching, respite, wandering safety and educational placements?” Nope, they didn’t spend a dime on those.
Are you ready for 5 MORE YEARS of that!!??

Neither are we. Here’s what you can do NOW. Not next week. NOW.
We have less than 36 hours to stop this bill from going through as is.
All it takes is ONE senator to stand up and say, “I am NOT going to support this bill as is” to stop the bill from racing to the President’s desk.
These seven senators are the ones most likely to hold the bill.

CALL THEM TODAY, AND ASK THEM TO HOLD THE BILL!

Senator Tom Coburn, 202-224-5754
Senator Ted Cruz, 202-224-5922
Senator Rand Paul, 202-224-4343
Senator Mike Lee, 202-224-5444
Senator Roy Blunt, 202-224-5721
Senator Ron Johnson, 202-224-5323
Senator Jim Risch, 202-224-2752

ASK THEM TO HOLD S.2449, THE AUTISM CARES ACT, UNTIL IT CAN BE FIXED.

They have been getting lots of calls. Your calls will be brief and painless, but necessary. If you’ve already called, call again.

(Feel free to call your own senators as well. It can’t hurt.)

Act now, or we’ll all wait 5 more years for another chance at a bill that would actually help our kids and adults with autism.

To learn more about the Autism Policy Reform Coalition click here http://autismpolicy.org/our-mission .

20140626-071627-26187579.jpg

Congraduations Christian!

June 18, 2014

 

By Lisa Ackerman

Recovery from autism happens (1.) As promised I will keep sharing those stories! Meet wonderful Christian. Any parent would be proud of this great graduate. But watch and you will see that there is so much more to his story.

https://www.youtube.com/watch?v=ulH-Jo0b_7U

Not only has he overcome and recovered from autism, but his description on how an autistic trait can really help lead to success is amazing.

Congratulations Christian! He has been accepted into NYU’s Tisch School of Music, but he has elected to begin his general education at a local community college this fall and transfer when he is ready for greater independence. I adore this family. Big hugs to Doug, Andrea and his sister Marley. Thank you for sharing Christian’s wonderful accomplishments with us. We cannot wait to hear about what’s next in Christian’s future!

Christians selfie

And for TACA families: there are many more congraduation stories rolling in. Families who were once told “there is no hope, nothing you can do” are sharing their wonderful stories with us. We have much to be hopeful for. The reality is that autism is truly treatable!

 

References:

http://tacanowblog.com/2014/06/09/recovery-from-autism/

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