Category Archives: life with autism

A trip not taken is sometimes the smartest travel plan

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Sometimes the smartest travel plan is to choose NOT to travel. In parenting, and particularly with autism parenting, you have to decide that a trip will be too hard to accomplish at this time. It’s not that you’re giving up on the idea, it’s just that right now, not everyone in your family can travel a great distance.

I know my son has the ability to manage a 5 hour flight, but at this time, a 10 hour flight, no. As you may recall, we’ve traveled to one of our favorite therapist’s weddings in Canada two summer ago, and just that distance within North America was a very big challenge for us. When a close friend decided to get married in Cornwall, England, I had mixed emotions about how to accomplish this outing with children in tow.

National Trust seaside park, Cornwall. Celtic Sea in the distance.

Originally, I had planned to take my entire family and then discovered that expense prohibited that choice. Then, I thought I would just take my son who loves British history and then the length of the trip to London and then to Cornwall just seemed a flight too far. And then I thought I would just take my daughter, who I can more easily travel with, and then I thought…I’m in a wedding…I need to focus on the wedding.

So, you can see a great deal of thought goes into the decision of “who can come on a big trip?” It’s not a clear decision when a family member has autism. There are many additional thoughts that have to be accounted for–can I get the food we need for the special diet? How much of the setting can I control? How exhausting will the actual travel be? As I had not taken this trip before, I didn’t feel that I could anticipate enough in advance to make this a smooth experience for my son or even my younger daughter. In the end, I went alone to my friend’s wedding and our kids went with my husband to visit his family.

Morrab Gardens, Penzance

And let me tell you, it is a strange experience to travel alone for the first time in 18 years. And yet, by taking this time to decompress in nature, at a friend’s joyful event, I have more internal space to approach a new school year, an important milestone birthday for my son and the recent passing of my mom with greater clarity and calm.

So while I am determined to get my son with autism to Cornwall (and the rest of my family!), I felt the first trip was a good scouting opportunity for me. I was able to see what parts are going to annoy him (the overnight flight may need to be broken up into two legs), the long train ride (again, may need side trips along the way) and the lack of gluten-free options in Cornwall, England. I’m sure the dining options are there amidst all the fish and chips and pub food, it’s just that I’ll need to do a better job finding them before my next trip across the pond.

If you have visited Cornwall and have suggestions for me and my son, feel free to leave us a comment. Brilliant!

Gospel According to Autism

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As my son has gotten older, and his many years of autism therapy have made it possible, we have started going to movies. Not just any movies for my son J. Oh, yes. He loves art documentaries and I’m lucky for that, because I love them too. Recently, a friend invited me to attend a documentary film festival (“Doc Days”) in Austin that he helped organize.

I took J and he LOVED it. We saw the Gospel According to Andre. He couldn’t contain himself. When I see him start rocking in his chair, and talking to himself, I know there’s a lot of creative soup about to bubble over! And then we have to leave for him to draw, and write, and imagine. Wouldn’t that be fun?

He had to leave in the middle of the movie because he said, “I am so inspired right now! I need to go home and draw.” So, we got up and left. HA!

The power of film is to inspire and connect. My son tells me he is inspired by his physical movements more than his words. There are many ways to be connected to art and it’s important that all of us accept the way people with autism express their happiness!

TSA Cares program helps disabled travelers

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Of the many horror stories that I see on social media about traveling with a disability, the ones that usually scare me the most relate to getting kicked off of an airplane or having a terrible time at security. So, to assist passengers with disabilities or special healthcare concerns, the TSA has created a program called TSA Cares that allows you to call in 48 hours prior to check-in and request assistance getting through security.

I called TSA Cares yesterday (1-855-787-2227) at their Kentucky-based offices and spoke with an incredibly helpful young man about how I could get through the TSA security lines with my son with the least amount of worry. He told me that at any time, you can request “going to the front of the line” with a person with a disability. Make this request to the TSA supervisor at the airport you are using. Ask if there is a Persons With Disability (PWD) line that you can utilize. At some airports, they will direct you to the TSA fast pass lane. TSA did not require this, but I also always travel with my son’s doctor’s diagnosis letter with me along with passports and IDs. Since autism is an invisible disability, I like to have all of my paperwork handy so that there is no confusion about the need for accommodations.

And if you are inclined to complain that people with autism should have to wait in line like everyone else, that’s like holding a grudge that those with physical disabilities get the best parking spaces. P–u–leez. Give me a break.

It’s really really hard to travel with autism and every effort should be made to be inclusive and helpful to those traveling with challenges. We all want to experience life, and travel is a part of life.

My next phone call is to the Vancouver Airport to see what kinds of accommodations are available for autism as we make our way for the first time through customs and immigration. Wish us luck.

And Travel Well.

 

Independence is our goal!

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Last spring break, when my son and I were en route to Salt Lake City on our way to the National Ability Center ski program in Park City, UT, we sat in front of a representative from Nike Shoe. I talked to him about how amazing my son was and yet was still dependent on parents or an aide to tie his shoes for him. And low and behold, Nike was already working on this, a shoe called the FLYEASE. Another really important piece of the independence puzzle for people with disabilities–shoes that work for people with motor challenges! Click here to read about it. The shoe was inspired by a teenager with cerebral palsy that wrote a letter to Nike asking for their help in creating a shoe that he could put on himself once he went to college. It’s a great story.

My son has since learned to tie his own tennis shoes, which as a teenager, is a great great victory for all of us. It means he is less dependent on an aide or a caregiver for getting dressed. He still wears all elastic clothes because zipping and snapping are difficult with his low motor planning, but he can now get his shoes on himself. Last year, he bought his very first pair of lace shoes.

Anyone with a disability can probably relate to my son’s sense of accomplishment when a new task that has been very hard to accomplish (years of occupational therapy spent trying to master this skill) is finally conquered. The first time he was able to tie something was on a hoodie he was wearing. We were in a restaurant and he screamed, “Mom, I am cured of my untying!” We are so proud of him!