Happy Fathers’ Day to all the “Proud Dads” out there.
Posts Tagged With: cerebral palsy
I got an exciting email today from Footpath Pictures. The US Television rights for their documentary CERTAIN PROOF: A Question of Worth was just acquired by Starz Entertainment. Apparently, Starz will be airing the broadcast premiere sometime in 2013. Do you think it is too early to set my DVR?
I seriously recommend this film to anyone and everyone. It is especially impactful if you have a connection to an individual that happens to have both motor and communication disabilities.
For those of you who have not heard of this documentary it is a powerful set of stories. Here is how they describe the film on their website:
a question of worth
Certain Proof: A Question of Worthis a feature documentary about three children living with significant communication and physical disabilities, who struggle against the public schools in an emotional battle to prove their worth.
Over the course of two and a half years, “Certain Proof” follows the lives of Kay, Josh and Colin, three children with cerebral palsy. Despite multiple disabilities, they fight to prove that they are able to learn and deserve to be taught. Colin finds “No Child Left Behind” has exceptions; Kay combats harsh stereotypes inside middle school; and Josh faces continual doubt that he can learn at all. They and their families dare to hope in a striking testament to the complexity of the human spirit.
Here is a link to their trailer:
It has been a bit of time since my last post. I am hoping this post will make up for the recent silence. Our family has been focused a bit on some family issues, but mostly I have been pouring my spare time into Halloween related tasks. Halloween has always been an opportunity to let our creativity loose around our house. I have to admit that, prior to J joining our family, I had developed a bit of a talent with prosthetic and makeup special effects. Unfortunately, most of those skills were used to create effects not exactly kid friendly, so I have had to redirect my costume skills for awhile. I have instead turned to pumpkin carving and costume fabrication as my new Halloween creative outlet.
Every Activity Can Be Adapted Using AT
This rule may need a bit of defending because I am sure there will be some people that will start citing examples of activities they believe cannot be adapted.
First, let me make sure I am clear about what I mean by “activity”. I do not mean a specific level of proficiency. For example, someone might try to tell me that I cannot adapt playing Major League Baseball. That is a level of proficiency. However, the activity of playing baseball can (and has) been adapted. There may be some purists out there that will watch a Challenger League Baseball game and claim it isn’t baseball. Well, it’s been adapted. Some of those adaptations are equipment, some are rule changes, some are fan perceptions. If you get the chance to talk to a Challenger League player try telling them they are not really playing baseball. Continue reading
Assistive technology (AT) isn’t always for the individual who happens to have a disability. AT can also be something utilized by caregivers to make life easier as well. This weeks DIY AT entry is one of those helpful life hacks for the caregiver.
Part of J’s life includes a G-tube. Due to various issues, J receives a continuous drip feed through that G-tube using an enteral pump. That means a carefully measured amount of food is pumped directly into J’s stomach at a predetermined rate over a prolonged period of time. That also means that the carefully measured amount of food must be made every day. This is where today’s low-tech AT project comes in.
Wow, almost two weeks since my last post and this one isn’t exactly going to be focused on Assistive Tech either. I am hoping to get back to writing later this week, but most likely next week some time. I occasionally am asked to speak at various conferences, workshops, presentations, etc. More often than not I am asked to speak not regarding AT, but to provide a dad’s point of view on raising an amazing child that happens to have special needs.
This particular time I am being asked to talk about emergency preparedness for families with children that happen to have special needs. Not that I am an expert in the field. I am just a dad that has done some practical preparation for some of the emergencies that our family experiences from time to time and some of the emergencies that we (thank God) have not experienced yet.
I am curious if this is a topic that people would like me to spend some time writing about here. Let me know in the comments. Also, I would love to hear about any tips or tricks you use for emergency preparedness in your homes.
As you may have read in a recent post, I am exploring ideas to help J participate more fully in Challenger Baseball games by modifying a switch adapted pitching machine to help J throw the ball while fielding. That project of mine received some attention from another parent who was looking for a way to help their child play fetch with their service dog. Their child happens to have Cerebral Palsy, happens to use a wheelchair, and happens to need a little help throwing the ball. A very similar situation to my desire to help J participate in the fielding half of the inning during baseball games. Continue reading
When J was younger we used to read the Olivia series of books. AT Mom and I loved the precocious nature and imagination that Ian Falconer gave his character Olivia. When Nick Jr added an animated version of the stories to their lineup it was a natural for making our short list of TV shows we watched with J. One feature that was added to the animated show that was not in the books is “Olivia’s Rules of Life” where Olivia imparts priceless pieces of information like:
- “If you really, really, really want something it helps to use a triple please.”
- “School glue has many uses.”
- “Whatever the question costumes are always a good answer.”
They are often humorous and sometimes very practical (especially for someone 5-3/4 years old). Well, I thought I might start something new here at AT Dad’s Place – “AT Dad’s Rules for an AT Life”. I am hoping it will be an occasional repeating feature that will share tidbits of practical (and sometimes humorous) knowledge for others on their own journey through the unique valley of Assistive Technology.
If you have any advice that you would like to add to the rules of life list let me know. I will also be adding a page here to track all of the rules as they accumulate.
This is the third post in a series describing assistive tech and adaptations related to J’s first season of Challenger League Baseball. First, I adapted a baseball glove for J to wear in the field. Then I adapted a ball cap for J to wear with J’s headrest. Today I want to share my first attempt at helping J further participate in the field.
As you may remember, J’s favorite part of baseball is batting. In fact, J’s favorite position is Designated Hitter (it’s a good thing we got on the Blue Jays, an American League team ). I believe part of the reason that J is not too fond of fielding has to do with what fielding entails from J’s point of view.
When we head out to the field, I help J put on her adapted a baseball glove and then wheel out our spot at second base with J’s friends. We get ready for the other team to bat. Any time a ball is hit, we either charge the ball, backup first base, or cover second base depending on the situation. For J, the running can be fun but if the play involves the ball coming to us it really means that dad catches and then helps J throw the ball. Not a lot of independence there.
I started to think of ways to increase J’s direct participation in the field. My first thoughts were around helping J throw the ball. I imagined a scenario where we would charge a ground ball. I would field the ball, load it into something, J would activate that something, and the ball would be thrown/shot/flung/whatever across the field to a teammate. Now that might increase J’s interest in fielding.
Again going with my first thought, I started to imagine a switch adapted pitching machine. After all, pitching machines already exist and are designed to throw a baseball. I thought someone must have already switch adapted one. Then I remembered an internet video I saw somewhere. It was taken by a dad, and showed his two sons. One was pitching batting practice to his brother. The brother pitching happened to have Cerebral Palsy and was using, you guessed it, a switch adapted pitching machine. I knew I was on the right track.
I did a quick Bing search for “switch adapted pitching machine”. Among the hits were a patent for exactly what I was looking, and a “Wireless Pitching Machine” from Enabling Devices.
Wireless Pitching Machine from Enabling Devices
It looked promising, so I ran the idea past AT Mom, got approval( ), and made the purchase. I then waited and watched the front porch for what seemed like 5 – 7 business days. When it arrived, I tore into the box, did some finishing assembly (Enabling Devices does most of the assembly for you), and scoured the house for the needed batteries.
Enabling Device’s Wireless Pitching Machine with J’s switch connected.
I was glad to see that the pitching machine came with both the wireless controller (which has a switch port) and a direct switch port to the machine itself. I like plugging J’s switch directly into the what it is going to control. I feel it makes it more obvious to J: “press this switch and that thing it is connected to will do something.”
I turned on the pitching machine, loaded the three foam balls that came with it, and pressed the pitch button. I could hear the flywheel spin into action. WWWWWWHHHHHRRRRRRRR!!!!!!! Then out came the first ball – thup! I caught it and started to see J using this on the ball field when all of a sudden – thup! A second ball flew at me. Followed by – thup! The third ball flew through the air towards me. Well, that was my first hiccup.
It turns out that the Fisher-Price pitching machine that Enabling Devices adapted was intended to be used as a batting practice trainer. Of course that makes sense. Kid presses the button, grabs the bat, and gets three pitches to hit – thup, thup, thup! Still it was not what I was hoping for as an AT solution for helping J throw the ball while fielding.
I thought, “no big deal, just load one ball and after it throws that one it will just spin and not throw anything else.” But like I said, that was just the first hiccup.
J about to throw a few balls AT Dad’s way.
The next thing I did was grab one of J’s Challenger League baseballs. They may be a touch smaller than a traditional baseball (or about the same size), but they are much softer (in case anyone gets hit by one). I loaded it into the machine, hit the button, and ……… nothing. The weight of the baseball was too much for the loader mechanism and the ball was jamming the flywheel. I pushed it through with my bare hands. Hmmmm….
Then I got the idea to start the flywheel before loading the baseball. I pressed the button, the flywheel whirred up to speed, I dropped the ball into the loading tube, and ……… flup. The ball sputtered out onto the floor after a two foot flight with an apex of about 6 inches above the ground. Not exactly throwing anyone out from second with that. Hmmmm….
Then I got the idea to use a tennis ball. Challenger Baseball is a wonderfully accommodating environment. They use whatever type of ball a batter needs to be able to make contact. Bright balls that are easier to see. Softballs that are easier to hit. Racquetballs that fly off the bat a bit further. Why not change the ball in the field to accommodate a player’s throwing ability?
I acquired a pack of tennis balls and loaded one into the machine and knew we had a problem. The smaller size of the tennis ball and the additional weight (when compared to the foam balls that came with the machine) meant the tennis ball fell right past the loader mechanism into the bottom of the machine. I turned the thing upside down and extracted the tennis ball. Hmmmm….
What about starting the flywheel first again? I pressed the button, the flywheel whirred up to speed, I dropped the tennis ball into the loading tube, and ……… flup. The tennis ball sputtered out onto the floor after a three foot flight with an apex of about 8 inches above the ground. Better but still not throwing anyone out at first. Hmmmm….
What about the foam balls that came with the machine? I loaded up the three balls to see how far they flew, hit the button, heard the flywheel whirr up to speed, then THUP! then THUP! then THUP! All three flew between 9 and 9-1/2 feet with an apex of about 24 – 28 inches. All of those measurements were on the flattest trajectory setting (there are three trajectory angles) and with the machine sitting on the floor. Increasing the trajectory angle shortened the distance and increased the apex of the ball flight, as expected.
Well it looks like this idea was a bust for helping J participate further in the fielding aspect of baseball. However, it has become a very fun activity to play catch with daddy. I bring the machine out on the back deck and place it on our table or we go in the front yard and I place it on a deck chair. I load all three foam balls and let J decide when to press the switch. I then go crazy trying to catch all three balls. There are times I miss one or two and have to go chase it across the deck/yard. There are other times I attempt crazy diving catches because I was “caught out of position”. J also likes to catch me when my guard is down – activating the switch after I turn my back or go for a drink of water.
Hey dad, catch!
I haven’t given up yet though. The next step is a bit more advanced. I am just waiting for the right time try some voltage modifications on the machine. I am hoping that increasing the voltage provided to the motor will increase the flywheel speed which will result in further throwing distances. Just don’t tell AT Mom before I can get a chance to try.
As I wrote earlier, J started playing Challenger League Baseball this year. AT Mom and I may have been more excited than J with the approaching first game. The last practice before the game J received a uniform – a Blue Jays jersey and ball cap.
The day of the game arrived! We got dressed, packed up, and headed out for the ballpark. We arrived for warm up with the team. AT Mom and I had the biggest smiles on our faces watching all of the kids arrive in their uniforms complete with huge smiles on their faces, ready to “play ball!” It was a very sunny day, perfect for a baseball game. AT Mom whipped out the sunscreen and started protecting J’s exposed skin. (I was too excited for the game to start, after all J and I were about to play baseball!)
After AT Mom finished applying sunscreen I moved to complete the uniform by adding J’s ball cap. I took a step back to admire “J the baseball player.” J’s head turned to look at a friend and J’s ball cap fell forward. I stepped up and fixed the ball cap and took another step back. Again, J’s head turned towards the crack of a bat from one of J’s friends taking batting practice. Again, the ball cap fell forward.
For then next couple of minutes there was this sort of dance going on, J’s ball cap falling forward and AT Dad stepping in to readjust the ball cap. The problem was that whenever J’s head moved the ball cap would rub against J’s headrest. After a few minutes I realized why some of J’s teammates simply did not wear their ball caps, and we went capless ourselves.
The first couple of games involved the same dance each time. I would try to help J wear the ball cap, constantly fixing it, then give up and go without. J was happy to not wear the cap and focus on playing baseball. I think it helped that J could feel more wind through J’s hair as we ran the bases without the ball cap.
Then one game I got to talking with one of the other parents about possible adaptations for the ball cap. I thought about building a sort of halo that could suspend the ball cap above J’s head. AT Mom thought that would just be visually distracting. (She was right.) Then I hit on an idea that I thought would work great.
Side view of my ball cap to show before adaptation.
Back view of my ball cap to show before adaptation.
The problem was that J’s headrest would rub against the back of J’s ball cap and spin the cap of J’s head. What if J’s ball cap did not have a back to rub against the headrest?
Side view of J’s ball cap after my adaptation.
Back view of J’s ball cap after my adaptation.
I cut out the back three panels of J’s ball cap and used barrettes to attach the front of the cap to J’s hair. This allowed J’s head to turn against the headrest without rubbing the ball cap. The first time I tried the new ball cap it stayed in place for nearly the entire game. That includes running the bases.
J wearing the adapted ball cap.
The next couple of games did not fair as well. The cap stayed on better than before, but J’s fine hair made it difficult to get the barrettes to hold well. Thinking about the design a bit more, next season I will cut out the back three panels but this time I will leave the Velcro strap across the bottom used to adjust the size of the ball cap. When next season comes around I’ll have to remember to write an update to how well the new design works.