Two decades have brought us a lot of adapted products. Especially those that revolve around eating. While our twins' premature births brought low birth weights and developmental delays they had their older sisters to observe and imitate. We often did not see the advances they were making and continued to look at them as our babies. Then it became apparent that these two were not going to stand for it. At. All. I remember when one of the twins (the very babiest of our twin babies) pitched a fit that we couldn't seem to resolve. Until, finally, she had motioned and growled at us enough that we narrowed down the subject and the action she desired. She wanted to sit up to the table just like the way the rest of the family did. Her wheelchair at the time was a supportive stroller. No highchair, no booster seat, nothing babyish would pass...it had to be a WOODEN chair. Just because the cerebral palsy had delayed her speech and developmental milestones didn't mean she was going to be content waiting for it to happen...and wait to join the life of her big sisters. That was Continue Reading
Accessibility and trolley tours
We keep our eyes out for trolley tours of all kinds. I'm not sure when it first happened...I think it may have been a quick jaunt from a resort to the shopping area at a beach. It soon became clear that we liked trolley tours, especially our daughters. What's not to like? Trolley tours are like a tame amusement park ride, an education and some entertainment all wrapped up in one. And if you're really lucky, your driver is also part stand-up comedian. (Face it, after travelling with your family for more than a day you are all ready for some comedic relief!) And while many are hop-on hop-off, we tend to just stay on, hear all the history and anecdotes, and THEN choose what sites to return to. This way we still avoid any extra loading and unloading of wheelchairs to hit all the main tourist spots. Trolley tours can make things easier, even in large cities. Especially in cities. Trolley tours can save us some of the stress of city travel with a wheelchair. Some of the tours will come directly to a hotel for pick up! That has happened to us in New Orleans and Boston. It Continue Reading
More than you can handle
Some days are just too much. This is what I found myself thinking today. It was a day of tending to a sick daughter without the help of a husband because he was also sick. It meant absolutely nothing was getting checked off my to-do list. But the worst, to me, was that I was finding rest by napping in spurts at various locations of the house. Getting woken up with complaints of discomfort each time I started to drift into deeper sleep was painful. I had cancelled and rescheduled appointments that were going to be missed, which felt like two steps forward, one step back. I still needed to take the healthy daughter to her physical therapy appointment after school. Then, after helping her to change from her work clothes, attend a fundraiser together. I started to feel cranky and irritated. It brought back a vivid memory... A decade ago I had another moment where things were most certainly too much. One day, as I hurriedly attempted to make it to one daughter's tennis match, I discovered that the van lift had stopped working. Now please understand, just a few hours earlier I Continue Reading
Using a portable ramp for access
Why we travel with a portable ramp in the back of our van... Several years back we began attending a new church and, along with that, making some new friendships. If you are a family affected by disability you potentially face different challenges in finding ways to meet up with friends. Sometimes it is obvious, for instance when you come via two power wheelchairs, that access is going to be difficult if not impossible. We were invited to a family's home to hang out and eat together. I needed to politely ask if there were steps into all the entrances or any flat level access for our wheelchairs. As luck would have it, it was a split level home and steps were everywhere. We debated whether we wanted to carry our then small-ish daughters into the house or move the party to a restaurant or even our house. (We continue to be fine with any of those options as the friendships are worth the effort!) I don't recall what we determined to do but I do recall a package arriving not much later...a portable ramp with the message "we always want you to feel welcome in our house...and anywhere Continue Reading
TSA CARES for travel with disability
TSA CARES may create a smoother travel day for those with a disability. Our daughters love to Fly. I meant to capitalize that. They speak of flying as if it is a reverent topic. The irony is that I have never liked to fly and...even more ironic...they are both in power chairs which is notoriously unfriendly to flying. It can be very difficult to travel with disability. (Have you SEEN the viral video of the man watching out his window as his chair falls off the conveyor as it is unloaded?) In fact, one of the reasons I started finding jobs for the girls to earn money is because I needed them to understand how much effort it takes to save enough money to buy an airline ticket...and to focus on that instead of pestering me to plan a flight. The fact that most of our flights have had at least one sort of hiccup, sometimes an outright belch, does not deter them in the least. In fact, it somehow only ups the excitement to them. They anticipate the struggles we are bound to encounter and actually increase in excitement as it grows closer. I don't understand it in the least. They have Continue Reading
Free YMCA membership
It's fun to play at the... Did you know you can receive free membership with your Medicaid card at many YMCA's? For almost two decades we looked wistfully at the fabulous YMCAs in our community. Then unexpectedly we recently discovered that our daughters are able to enjoy free membership using their Medicaid cards! Additionally, because they are physically disabled and not able to attend independently, they are permitted to have their personal care assistant join them with no added cost. This is great news because we can access activities without having to use money we budgeted for other things! While each club is unique there are many things to explore within the exercise rooms and, our personal favorite, the pool. There is something for every ability with zero cost! The friendly atmosphere is sure to be a hit with our girls and others who are looking for some personal interaction and new surroundings outside of the house. As we unloaded and headed into our local "Y" I felt a bit anxious that people would give us those long looks of curiosity. Instead we were given a warm Continue Reading
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