We are headed to a San Antonio waterpark to beat the heat for free! Well, nothing is free, but we book a hotel stay each summer using credit card points that I use to pay for all of my son’s autism therapies! I highly suggest paying as many of your autism therapies as you can on a points credit card. You’re going to buy the therapy anyway, you might as well earn some free hotel stays or airplane rides while you’re at it!
Although our budget this year doesn’t support outside of Texas travel, we are looking forward to taking long weekends to San Antonio, Galveston, and Dallas over this summer.
Nothing interesting enough for travel magazines, but a major victory for a child that was unable to leave our house just a decade ago. Our first trip ever was 10 years ago this summer so in my next blog I’m going to reflect on the changes and evolution of our son’s progress in that decade of taking trips, small and large.
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.
I never post political information, but as my son is a child in the Texas schools, and this blog is about life with autism, these series of articles from the Houston Chronicle deserve wider publicity. According to amazing reporting by an investigative team at the Chronicle, we learn that the state legislature cut the Texas Education Agency’s budget by $1.3 billion in 2004. The agency’s possibly illegal, and definitely immoral response? Set an arbitrary target of 8.5 percent for special education (lower than any other state), cap it there, and call everything else, “over identifying.” Justify to the federal government, that Texas education “cures” disabilities through “unique teaching methodologies” (ie. magic!) and force tens of thousands of children to receive no services, leaving thousands of parents to drop out of the workforce and home school. This “target” must be repealed and the state is going to need to raise taxes to plug this gap they created. I know, when hell freezes will taxes be raised in Texas for education, but this is an outrage. We are the state that cuts taxes on the backs of DISABLED CHILDREN. Okay, rant is over, now back to a blog about traveling with a disability.
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!
Check out this really well written blog about traveling in a wheelchair. What a great guide. And the layout of the site is just beautiful. Puts my little diary-like blog to shame. But, it gives me something to go for in the future. It also encourages me to get more opinions from my son as he grows up. He was a small boy when I started the blog and not one to have many things to verbally communicate. He’s made more and more strides in the last 5 years that I want to have a he said/she said blog post in the future. I do get his opinion but I’d like his voice to come through more clearly in future blog posts.
Well, we finally did it. We managed to make it to ACL (Austin City Limits Music Festival) and enjoy it without a hitch. My son and my husband enjoyed the Monsters and Men show on Sunday afternoon at the last day of the ACL Festival. Also, if you have a disability, there is an ADA station that you can go to near the entrance to the festival where they have ADA porta potties that are locked and only for people with a disability. They also provide you with an ADA wristband, and if there is room, you can watch some of the bands from an ADA access stage.
The one hiccup is exiting the festival. Once my son is done, he’s done. So, we needed an exit that didn’t require fighting our way back through the huge crowds. To hopefully figure out a solution, I wrote a letter to the ACL festival after we went and asked about next year’s exit plan for people that have autism and need to leave from another exit without fighting through 70,000 people to get back to the one exit gate. The promoters said they would look into this issue for the 2016 concert. So, we’ll see.
I never thought ACL would work, but my son asked to go, he said, “Pretty please, por favor.” So, how could I refuse such a polite request?
My philosophy on outings is…I just try different events with my son and sometimes they’re just not fun and we leave early, and sometimes, with the right supports, we can make it 20 minutes or an hour and that makes everyone really happy. When we left he was very proud of himself and said, “I made it through the whole concert.” Meaning, he made it through an entire act before leaving. We will be back next year!
I’m excited by the recent additions of more and more programs offered by cultural institutions to provide services to differing types of disabilities. For years, ADA has meant wheelchair accessibility, and that’s very important, but also important is meeting the needs of those with intellectual and developmental disabilities, those with visual impairments and other types of disabilities beyond providing a ramp into a building. Speaking from the perspective of a parent with a child with autism, I can tell you that my son benefits ENORMOUSLY from cultural institutions like libraries, museums, and concerts when he can manage the sensory issues. I’m happy to share that our local museum the Thinkery here in Austin has provided several days a year specifically geared to the needs of children with autism and other sensory issues. It’s a great way to enjoy things that typical families take for granted. We all want our kids to enjoy being kids. These community initiatives allow us as parents to help provide that. If you know of a good cultural program that benefits people with an intellectual or developmental disability in your city that you’d like to share, please feel free to add a comment and let us know about it.
For several years now, I’ve been taking my son snow skiing in Park City, UT, using a wonderful adaptive program called the National Ability Center. They have recreational therapists that work with people with various disabilities teaching them winter sports and running summer camps. I cannot recommend this program highly enough, although it’s popularity means you have to get your child’s paperwork in months in advance. My son started in 2010 and this year was his fourth time going to Utah during the winter.
Here’s an interview with my son about the experience. What did you think when you first tried to ski this year:
“At first when I went on [the snow], I was very scared, but then was very worried when I was ready to go, but when I was already skiing, I noticed that I was still in contact with my guiding. I did try to keep balancing.” Did you enjoy it?
“Yes I did. I was making sure I wouldn’t fall.” What’s great about skiing?
“It’s just that it has a great sense of because I love the snow. But, this year there wasn’t enough snow. It was kind of snowless.” Would you like to go back again?
As a parent of a child with autism, I have taken many “trips” to the Texas Capitol building, and it is a gorgeous structure to tour. However, I’ve never been there as a tourist, not once in my eight years of trips as I’ve always gone there as an autism mom and advocate. I’ve testified at every session since 2007 (the first session that I knew my son had autism) on legislation related to disability services, special education and access to autism therapies. I have seen many interesting nooks and crannies of the Capitol building during my now eight years of autism advocacy and learned a thing or two about how laws are made and how advocates working together can make a difference.
I started my efforts with the 2007 Session working to get laws passed for the coverage of autism therapies and now just finished testifying at the 2015 session, again in support of access to autism therapy. One of the things that I learn is that slowly oh, so slowly, does autism law change. But, the few laws I’ve been able to see change have been well worth it.
This year I was speaking in defense of funding that is certain to be cut, and that’s a real shame, because my own child has benefited so greatly from the type of therapy on the chopping block–funding for Applied Behavior Analysis (ABA). ABA can help children with autism gain speech, reduce tantrums and allow them to more fully participate in life by helping them overcome some of their anxiety that keeps them homebound. I testified, not because my son would likely use this program, but because other children in the state need this opportunity.
I know for my own son, ABA helped him immensely. He’s able to leave our home, attend school without tantrums (well, very few) and speak in sentences, all things that were impossible to him 8 years ago. I’ve even asked him as I’ve watched him excel in school and manage his tantrums, “How did you accomplish so much?” and his answer, “the therapies worked.”