The Not So "Friendly" Skies

Shortly after Christmas, we decided to go on a family vacation to Jamaica during Lauren's spring break from college. We used a travel website that booked our hotel rooms as well as our airline reservations. I told my husband that he had to make sure either he or I were sitting next to Dominic for all four flights (we had connecting flights both going and coming back through Charlotte, North Carolina). Imagine my surprise, when we received our seat assignments for the airline flights and they had booked only one flight out of the four with one of us sitting next to Dominic. Maybe there are some 10-year old boys out there that would be okay being separated from their families, I knew Dominic would not be okay. I would rather not mention which airline we flew on, but I will tell you, it was not United. The hubby said, "don't worry about it, we'll wait until the day we leave and I'm sure we can get someone to switch with us!" Um, no. I looked at him and said, "I'm not going to rely on a stranger that I don't know switching their seat." I grabbed the phone and called the toll free number for the airline. I explained to the customer service representative that I had a child with Autism and my husband or I needed to be sitting with Dominic on all four flights. Her response was a flat out "no." The explanation given was, "well, when you book "last minute," that's what happens." Excuse me? I was like, "how is booking several weeks ahead of time, "last minute?" She said, "well, we have people that book their reservations a year in advance!" I then said calmly, "let me talk to your supervisor, please." She then put me on hold for an HOUR. One thing I've learned from having a special needs child, the "art" of patience! When the customer service representative finally got back on the phone, she told me that Dominic and I were now seated together on all four flights. She had to "bump" Lauren from her seat on one of the flights and charge us $50.00 more, but I decided not to make a big deal out of that. I said, "do I need to bring a letter from his psychiatrist explaining his Autism diagnosis?" Her response, "no." I thanked her for her help and then hung up. After I got off the phone, I was thinking to myself, why didn't the first customer service representative just take care of it? why did it have to take a full hour to get it straightened out? Dominic has flown a few times before, so he is somewhat familiar with the boarding process, finding your seat, etc. On the flight to Jamaica from Charlotte, one of the flight attendants gave me a hard time because Dominic didn't have his seat belt on. We were not taking off, landing or experiencing turbulence and he was sitting in the middle seat. I didn't have trouble with being told that he needed to put it on, it was how the flight attendant talked to me. He was like, "didn't you hear the pilot make several announcements?!?!" I guess I hadn't. When we came home last Friday and were sitting in the waiting area in Charlotte, getting ready to board, I was chatting with a mom who was traveling with her three-year old son. She was telling me that they had been waiting for nine hours at the airport because their original flight had been cancelled. They didn't receive a food or hotel voucher either. Good grief, I can't even imagine what kind of shape Dominic would have been in, had he had to wait that long! Airports have places for charging your electronics, sending texts and some still allow smoking indoors. Flying is stressful, overwhelming and exhausting, but to travel with a special needs child or adult, those levels are heightened. How about this for an idea? I propose that all airports have playrooms with an area set aside as a "sensory room" where the families of special needs children and adults could get a break from the hustle and bustle of traveling. Now, wouldn't that be awesome?

NOTE: http://www.disabilityscoop.com/2015/03/17/tsa-help-special-needs/20137/ . I came across this information a few days ago - wish I had known before we flew to Jamaica - hope it helps my fellow travelers that have children or adults with special needs!

Those "Steps" to Independence Can Be Hard

We are heading towards 600 orders for Dominic's business. Since our long-term goal for Baked Goods By Dominic is having a "brick-and-mortar" and hire those with disabilities, it is essential and imperative that I continue to teach him all parts of the business. Since I prompted Dominic for so many years for speech, he has become "prompt dependent." What that essentially means is that he will look at me for a prompt, like, "what do you do next?" I do that one a lot. Dominic has been going to a private speech therapist for over ten years and she reminds me often that Dominic usually will know the answer, if I am patient and wait for him. That has been a very hard habit to break! Dominic has an incredible memory, so I put it to the test this morning. I didn't write out the steps, I wanted to see how much he could do completely on his own. We have a customer picking up his order today, but the only thing that had been done is putting the cookies into t...

Why We Pursued Guardianship of our Son with Autism

Last Thursday morning, my husband, Dominic and I went to our county's Probate Court and had Dominic's Guardianship Hearing. My husband and I are Co-Guardians, and we were granted "Partial Guardianship," which means Dominic can make some of his own decisions (future educational and vocational placement options, what to wear and how he wants to spend his free time), but my husband and I will make his medical, health care, legal, contractual and major financial decisions. The subject of Guardianship in the disability "world" has been and continues to be a controversial and divisive topic. I was a panelist for an Autism Conference this past summer and presented on what it's like to have a child with Autism. Towards the end of my presentation, I mentioned that Dominic had just turned 18 and that we were going through the Guardianship process. When the attendees could ask questions, the first person that went up to the microphone started telling me that I was...

Finding the Right "Reward"

During the 2023-2024 school year, I would ask Dominic if he would like to read a book from time-to-time. The answer was always a "no." I didn't want to put any pressure on him, since he got on the bus about 7:20 a.m. and didn't get home from school until close to 3 p.m. He also had art therapy, speech therapy and music therapy! This summer, I tried a different approach. The Capital Area District Library System has a summer reading program. You could log in reading times online, but with Dominic being such a "visual" learner, I opted to print out the sheet. We also worked with his private speech therapist to have him ask me, "Mommy, can we read a book?" He would have to do that first, me not ask him. The sheet from the library had two sets of circles that you could check off or put an "x" on. Each one had 30 circles, for a total of 60 circles. Each "circle" represents 20 minutes of reading. When he reached 30 circles, I told him...

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