Oregon First Responder Rescues Autistic Boy from Mud Flats
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Best of: Planning a Vacation With a Child with Autism

SummertimeNote: Cathy's "Littlest Pickle" is off to college this weekend, so we're running a Best of."

By Cathy Jameson

As we make plans for a family getaway this summer, I realized that I never shared what we did on our family vacation from last year.  After months of planning, we took the kids with a two-week vacation to the Pacific Northwest. 

Since I love surprises, we didn’t tell the kids where we were going until we were on the plane.  They guessed and guessed and guessed all sorts of fun places we might go.  Little Buddy guessed correctly that we were going to Washington state.  It wasn’t an easy trip to plan, but it was one of the neatest ones we have been able to go on as a family.  From one coast to the other, with all seven of us traveling, our trip was quite the adventure. 

CJ 1 7 18
 

TGIF: Toes Go In First…even if the water was only 55 degrees!

Plan, Plan, and Then Plan Some More

On any given day when Ronan and I leave the house, I plan ahead.  I think about how long we’ll be out of the house and pack what I think we may need.  That includes diapers, wipes, snacks, and a change of clothes, seizure meds, and emergency seizure meds.  It isn’t much to carry around, but those essentials must come with us. 

I knew that we’d need to bring a lot more than those few items on a cross-country trip.  Planning for the trip and for the length of time we’d be gone took months.  I had to think about so many things.

The travel aspect – Ronan hasn’t been on an airplane since 2007.  A million questions went through my mind as I thought about our trip.  Would he board the flight willingly?  Would he stay calm on the flight?  Would the flight crew understand autism?  What if we run into delays – what can we do/bring to help Ronan handle that?  What if we had a medical emergency en route?  How would we manage that?  Not being able to do a practice run at an airport in our area, I knew that we’d be winging it and that we’d have to plan for every possible scenario and hope for the best.

Transporting the comforts of home – Besides clothes and diapering items, we had to make sure we had enough of Ronan’s medications to last the two weeks.  I also made sure that we had enough for a few extra days in case we had any delays on our trip home. 

Other comforts of home that I needed to have on hand were Ronan’s safe foods.  I mailed a package of some of those items to the family we were staying with about two weeks before we traveled.  That lightened some of the load we’d be carrying in our suitcases and gave us a day’s worth of non-perishable must haves once we arrived.  Since most of us in the family are gluten-free, I had quite the stash of gf goodies for the plane trip west! 

Since I knew I’d need to go food shopping once we arrived, I went online well before we left to check out which stores in the area offered gluten-free products.   Happily, several stores boasted of gf items as well as organic fruits, veggies, and meats.  We’d be able to find more than enough comforts of home in the town where we’d be staying. 

When we travelled, we were able to bring some of those comforts from home with us.  One of the kids’ backpacks was the snack backpack.  Another backpack doubled as the diaper bag complete with 3 outfits should Ronan need clean clothes.  One more was the activity backpack with a deck of cards, some books, crayons and paper, the iPad, the Nook, and charger cords inside.  We were ready for anything!

Potential to wander – Not every family has to factor this aspect into their travel arrangements, but when you have a child who wanders, this may be the most important one to consider. 

The wandering potential was the most nerve wracking of things to think about.  But the people we were staying with knew this could be a major issue and had already gotten the ball rolling long before we booked our flight.  They’d investigated door alarms, door wedges, and had called their county police department on our behalf.  Good news, their community had Project Lifesaver! 

The day after we arrived, we went to the police station and dropped of a one-page Person of Interest document.  On it, we listed vital information that include our contact information, his medical conditions, and how to communicate with Ronan.  Thankfully, we never needed to enlist the help of the local law enforcement while we were in town, but knowing that they were a quick phone call away and that they had the tracking equipment to search for Ronan was a relief. 

CJ 2 7 18
 

After registering our Project Lifesaver information,

Ronan was given a Junior Police sticker.

Up, Up, Up and Away!

We hadn’t gotten beyond the ticketing counter before hitting our first hiccup.  Ronan, in his adaptive stroller to preserve his energy, did not want to get out of the stroller to go through the metal detector.  He did not allow any sort of pat down from the TSA people either.  That hiccup, one we had never factored into our travel time, caused quite the delay.  Thinking quickly, we asked what other options there were to help individuals with special needs get through security.

The TSA folks were very helpful and explained what we needed to do to, but with how resistant Ronan became, we asked for a head supervisor for assistance.  The TSA supervisor, recognizing and understanding Ronan’s struggle, gave us his contact information in case we could offer any assistance on our return flight home.  He also suggested that when we travel again, we should call ahead and let his office know that we’d be coming through. 

Now that we knew what to do for next time, together, we brainstormed a way to get Ronan through the line.  It took more time than we’d budgeted to get to the gate, but with the extra help, we were finally on our way. 

I know that other families with children with autism have encountered unkind responses from airport staff in the past—my advice, take this supervisor’s advice.  Call ahead.  Speak to someone in charge.  Ask them what you can do to make the process go smoothly.  If there is a supervisor who can meet you in the security area, ask them to personally assist you on the day of travel.  Our children have great needs.  Our children have great anxiety.  It’s nice to know that some people understand that and that they can help make the transition at the airport as smooth as possible. 

Getting from Point A to Point B

Since it had been so long since we’d travelled with Ronan, I wanted to call a few of the major airlines to find out what kind of restrictions they had and want kind of accommodations they offered to their special needs travelers.  We’d have some precious cargo with us.  I wanted to make sure that they understood that and that they could help Ronan.  One of my favorite airlines could:  Southwest. 

Ronan qualified for pre-boarding, as did the entire family.  That ensured that we had enough time to get on the plane and so that we could get seats as close together as possible.  Something else that helped us choose Southwest was that we were able to check Ronan’s big, bulky adaptive stroller at the gate.  Having it available to us at the next airport helped us safely get Ronan to the connecting gate. 

Happily, Ronan remained calm on the flights to our destination and again on our return home.  The people we met and those who personally assisted us went above and beyond our expectations.   We’d been blessed with the means to get from point A to point B and wanted to make the most of our trip.  Choosing Southwest, not just because their flights were more affordable, but because they were ready to assist us should the need arise was more than reason enough to fly with them. 

  CJ 3A 7 18

On a Southwest flight, Ronan was calm and relaxed.  Thank you, Southwest Air!

Tips for Medical Emergencies

We had to reduce some of our activities last summer when Ronan had seizures on our trip, but fortunately, he did not required immediate medical assistance while we were away.  Ronan has gotten very sick when we’ve been far from home though.  In fact, the last time we went to the Pacific Northwest, he was in the emergency room at the children’s hospital twice.  If I had to offer one more piece of advice for families who travel with a child on the spectrum, it would be to be prepared for medical emergencies. 

Because of those very scary ER experiences, I now travel with a folder that contains copies of medical records and documents.  Those records are from Ronan’s specialists, and the documents describe his current treatment plan.  I brought that folder in my carry-on on the flight and kept it, as well as other important information about Ronan (Project Lifesaver number, Medical Bracelet ID number, and a local emergency contact numbers) close by when we went exploring.  That way, should we have needed to get Ronan to a medical facility quickly, I could hand the team the folder and give them a head start on what Ronan’s team is doing back home.  

Something else I did when we went away was look up where medical facilities were.  When we had to get Ronan to the ER on our previous trip, we travelled by ferryboat.  If an ER visit was required again, we knew to keep the car at least a half-tank of gas and to keep at least one backpack stocked with diapers, wipes, clothes, and safe foods.  With the remoteness of some of the locations we had hoped to visit, if we had any medical emergencies, not just for Ronan, I wanted to know how far we’d be from an urgent care center.  None of us required it, but it was good to know that medical help wouldn’t be too far away in the areas we visited. 

Another tip I’d suggest when traveling is to share a medical update with whomever you may be staying with.  You don’t have to go into great detail, but do let them know what a medical emergency may look like so they know how to respond should one happen. 

The last tip would be to also let them know what is needed for any siblings left behind.  When we had to get Ronan to the ER in 2007, we left our other kids in the hands of family.  They quickly pitched in, but with how stressful and anxious I was about Ronan, they needed more directions than I thought to offer.  Thankfully, many hands lovingly pitched in to help us and it all worked out with. 

Finally, It’s Time to Relax

When we planned for the vacation, we thought of everything:  transportation, meals, medical needs, Ronan safety, what places to visit, which people to see, and how to make some good family memories.  I’m happy to say that even though it took tons of work, we made some good family memories last summer!  We got to see some exciting areas on the west coast.  We rode ferryboats and hike through several forests.  We saw mountains and wildlife.  We saw old friends and made new friends.  We even took Ronan out of the country to Canada.  Better than all of that, our hosts were more than ready to jump in to help us and were so happy to see us being able to do so much while we were there.  We were blessed in so many wonderful ways.

  CJ 3 7 18

On the trail, with Daddy as his guide.

Our trip this summer will be a lot shorter and a lot closer to home.  It won’t require traveling through multiple time zones or crossing the border.  But we’ll be together, and we will most certainly make some memories like we did last year. 

I’m glad I have last year’s trip under my belt to know what needs to be done, to know what worked, and to know how to plan for a successful vacation.  I’ve a few more things to figure out before we can go.  But soon, when we hit the road, I know we’ll be ready to have some good old family fun.

Cathy Jameson is a Contributing Editor for Age of Autism.

 


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Unavoidably Unsafe coverUnavoidably Unsafe: Childhood Vaccines Reconsidered
Authors: Dr. Edward Geehr and Dr. Jeffrey Barke

In Unavoidably Unsafe, Dr. Edward Geehr and Dr. Jeffrey Barke confront the prevailing beliefs surrounding childhood vaccines with unflinching scrutiny and bold insight. As seasoned physicians, they acknowledge the revered status vaccines hold in modern medicine while bravely questioning their safety and efficacy.

From the historical triumphs of polio eradication to the complexities of modern immunization schedules, Geehr and Barke unravel the layers of vaccine development and regulation. They shed light on the unintended consequences of vaccine mandates and the erosion of informed consent in the face of mounting pharmaceutical influence.

Drawing on decades of clinical experience and exhaustive research, the authors challenge conventional wisdom by addressing critical issues such as:

The proliferation of childhood vaccines and their impact on public health
The National Childhood Vaccine Injury Act and its implications for vaccine safety
The symbiotic relationship between pharmaceutical companies and regulatory agencies
The shortcomings of Emergency Use Authorization and its implications for vaccine safety
The presence of potentially harmful additives in vaccine formulations
A fresh look at possible links between vaccines and autism
Cautionary considerations regarding mRNA vaccines and their suitability for children
Practical guidance for evaluating the risks and benefits of vaccines for individual children
The significance of proper informed consent and patient advocacy in vaccination decisions


Unavoidably Unsafe is not an indictment of vaccines but a call to arms for informed decision-making and transparency in healthcare. Geehr and Barke aim to empower parents, guardians, and healthcare providers with the knowledge needed to navigate the complex landscape of childhood immunization responsibly.

In a rapidly evolving medical landscape where uncertainties abound, Unavoidably Unsafe serves as a beacon of clarity and integrity, reaffirming the importance of critical thinking and patient-centered care in safeguarding the health and well-being of future generations.

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