Friday, May 8, 2015
This week in "Things We Have To Figure Out"
Why is Kyle having so many seizures during the school day, but very few to none at home?
Is there something that's triggering it at school?
Fluorescent lights maybe?
Or is it just that when his majesty has demands put on him he gets stressed which could trigger seizures?
Or has he figured out a way to cause himself to have seizures to get out of doing his school work? (if anybody could do that it would be the king)
All we know is that he had about 4-5 days over the past 2 weeks at school where he had multiple small seizures in a short period of time and then napped for 2+ hours each day.
Today they said he had about 5 seizures in a 10 minute stretch and after 2 hours of him sleeping they called Wifey to pick him up.
And after she picked him up, all afternoon at home...seizure free and generally happy to be home according to Wifey.
And all last weekend... No seizures.
When we were off on Monday at the beach... No seizures.
We have to figure this out. But when Monday rolls around I think we have to send him to school and try to break the pattern or figure out the trigger.
Boy, epilepsy sucks. And epilepsy with a non verbal kid who can't clue you in to what he's feeling or any potential triggers sucks even worse...
Sunday, March 22, 2015
So there's a new thing that's starting to take off.
It's autism's answer to the ALS Ice Bucket Challenge that took the world by storm in Aug-Sep of 2014.
The autism one is called the Twizzler Challenge and it started innocently enough on Comedy Central's Night of Too Many Stars Benefit a few weeks back.
Basically, challengers pair up to nibble both ends of a piece of licorice until they meet in the middle – Lady and the Tramp style – and kiss and clap hands.
And now there's an official hashtag #twizzlerchallenge
And now there's an official hashtag #twizzlerchallenge
Here @aw and I are taking the #TwizzlerChallenge ❤️pass it on! twizzlerchallengeforautism.org #NightofTooManyStars #NYC4a
And in the 2 weeks prior to autism awareness month it seems to be picking up steam.
And most people are tying it back to the original charity from the Noght of Too Many Stars benefit which is a fine NYC based charity called New York Collaborates for Autism
New York Collaborates for Autism (NYCA) is a non-profit organization that strategically designs and launches innovative, one-of-a-kind programs to improve the lives of people living with Autism Spectrum Disorder (ASD). NYCA sees the possibilities for people with ASD and creates the path to achieve them.
And it appears that this thing has the potential to really take off.
So yesterday I posted on my FB page this article from a Vancouver city website about how the twister challenge was going to be for autism awareness what the ice bucket challenge was for ALS awareness.
And I wrote...
"Does autism finally have its ice bucket challenge?"
And overwhelmingly the autism moms and dads (well mostly moms) hated the idea and the hole campaign.
I'd say 90% of the comments were negative.
Most of the negativity came from 4 directions...
(1) Twizzlers are junk food with gluten and artificial colors in them that can be bad for some kids on the spectrum.
(2) it has nothing to do with autism and teaches no one anything about autism.
(3) nobody's gonna donate because of this...
(4) it makes people look stupid or silly. "Why should people have to do something stupid to raise awareness?"
And here's my opinion on all this...
Sometimes we autism parents just need to get the heck out of the way...
When the ice bucket challenge started out I felt the same way. I thought all the same things.
I originally thought:
--What does it have to do with ALS? I'm learning nothing about ALS by watching this. (I know there was some soft connection to people with ALS not being able to feel extreme temperatures, but that was a real soft connection that most people didn't get. Plus the whole ice bucket challenge pre-dates the ALS thing anyway)
--Nobody's gonna be guilted into donating because of this ice bucket challenge. The whole "accept the challenge or donate $100 to the ALS foundation" seemed ludicrous to me.
--People look so stupid and everybody's jumping on the bandwagon.
But once it got bigger and bigger the funner and funnier it got. It was fun going on FB and Twitter each morning to find out which celebs did it and which of my fiends did it.
And when a friend of mine nominated me I found myself googling ALS and learning more about it, and when the 24 hours passed I didn't donate $100, but i did donate $20.
And then I did my own ice bucket challenge as myself and as AUTISM DADDY.
And back then I challenged people to come up with an autism version. Some people came up with the "pie in the face for autism" and they jumped right in and started to do it back in September. They asked me to spread the word but I didn't because the ice bucket challenge hadn't run its course yet and I said back then "let the ALS folks have their moment in the sun and in the spotlight. Let's not jump in now. Our time will come."
So now it's a few weeks before Autism Awareness Day and we have the Twizzler Challenge.
Is it perfect? No. Is it silly & stupid? Yes Does anybody learn anything about autism? Not really.
Will people donate to autism because of this? TBD but if it takes off and celebs jump on the bandwagon it could raise hundreds of millions of dollars.
Now with ALS there was maybe 2-3 main charities to push people to...
With autism there's tons of organizations. So the ball is in our court. The original charity from the Comedy Central show is a really good charity in my opinion but when I do the Twizzler challenge I may direct people to donate to some local autism organizations.
The article I read from the Vancouver website ended their article by pushing people to more local autism organizations by saying...
If you are planning on taking part, don’t forget to use #TwizzlerChallenge and consider donating to any of these Vancouver or B.C.-based autism organizations:
So the ball is in our court autism parents! If the celebs and the general public think this is fun and funny let's not rain on their parade. Let's let them do it... let's join them in doing it... But let's point them towards the charities that we want.
And for those who say the "challenge" shouldn't have to make people look silly or stupid I would say that it absolutely must make people look stupid or silly. That is why the ice bucket challenge was so successful. It was easy to do. But it was a little bit of a "challenge" and it made people look silly. And it was short and easy to shoot on camera and share on social media.
This has all the same elements.
What's missing right now seems to be the "do the challenge in 24 hours or donate $100 to ____" aspect. Let's make sure that gets in there as well as the "I nominate 3 people" and call them out.
That's the other fun part. People like to be called out and hear their name on FB and Twitter....even if it's just from friends. Silly but true.
So let's let everyone have their fun. Let's not rain on their parade. Let's thank them for spreading awareness and let's point them towards the charities that we want them to support whether that be Autism Speaks, ASA, or some local charity in your community.
And if some reason this doesn't take off the way the Ice Bucket Challenge did don't get mad or sad autism parents.
And if it doesn't take off and you go trying to come up with a better version for autism remember the rules. It doesn't have to have anything to do with autism. However, it's got to be something that's fun and silly, but most importantly it's got to be short and easy to do and easy to shoot on video.
That's it. That's my 2 cents! I really hope this takes off!
Sunday, March 15, 2015
A couple of months back I got an email from an Autism Daddy reader. He was also the founder of a new autism GPS tracking device called AngelSense.
He was contacting me because he wanted to offer me & one of my readers a free gps device & free service for a year in exchange for a review of his product.
I hesitated as I usually do when I get offers like this. This time I hesitated for 2 reasons:
(1) I rarely accept offers like this because I don't have the time or the energy
(2) my kid does not have a history of eloping or running off or disappearing. So i thought the free product would be wasted on his majesty,
And then later that day this headline hit my newsfeed:
And then the horror of Avonte's story came crashing back to me. When Avonte went missing, we in the NYC Metro area became personally invested. It went on for months and it was tragic.
So seeing Avonte's mother made me more interested in exploring this device.
And supposedly Senator Schumer's bill was supposed to help fund these types of tracking devices. I read this a year back in January 2014 on the wcbs new york website...
Sen. Charles Schumer’s proposed “Avonte’s Law” will become reality thanks to funding from the federal government.
The U.S. Department of Justice says it will fund voluntary tracking devices for children with autism or other conditions that put them at risk for fleeing their caregivers.
Schumer announced the agreement Wednesday.
Schumer called for legislation to provide GPS tracking devices for autistic children and others with a tendency to bolt from parents or caregivers.
The senator said it would be similar to a federal program that tracks seniors who have Alzheimer’s disease.
The senator said the Department of Justice has agreed to allow existing grant funds to be used for the voluntary devices. The justice department confirmed the agreement.
But how does one access these funds? In February 2014 on the disability scoop website I found this article: "Feds Clarify How To Apply For Autism Tracking Devices" and these quotes were in the article. I highlighted a few sections that I want to draw your attention to:
Now it’s starting to become clearer how communities can obtain the funds Holder referenced.
Police should go through the same process they typically utilize to seek funding from the federal Byrne program, according to Max Dworin, a spokesman for Schumer. Law enforcement agencies can request grant money to pay for tracking devices and to provide education and training related to the issue of wandering, he said.
“Police departments apply for these every year for a variety of local law enforcement projects,” Dworin said. “Now, essentially, the Department of Justice has opened up this funding for autism.”
All applications must go through law enforcement agencies, so organizations and schools should work with local police to put programs in place,
Dworin said. Police departments that receive money through the federal grant will be responsible for designing and administering their local program and determining how tracking devices are distributed.
Research indicates that about half of children with autism are prone to wandering. Electronic tracking devices can be worn as a bracelet, attached to a shoe or belt loop or even sewn into a person’s clothing. In the event that an individual goes missing, a caregiver can call the monitoring company associated with the device in order to locate the person.
Ok, so over a year has gone by since both those articles and since the law was supposedly passed and I've heard nothing about it and I no of no parents who have successfully gotten a free gps device thru the federal government.
And in the meantime lots more kids with autism have wandered off and died. I can't find any statistics from 2014, but if you want to make yourself nauseous you can read HERE & HERE 2 high profile autism elopement / drowning cases that made news in the US.
So I thought let me email this guy back and see what this device was all about.
But before I did I went on their website www.angelsense.com to check it out and I was immediately impressed.
I was on the site for less than a minute when the chat window above popped up on my screen. I could have a live chat with a special needs mom and an AngelSense user to get any answers I might have.
I didn't chat (cuz I'm shy :-) but the founder of the company and I traded emails and then we scheduled a phone call so I could learn more about the service.
Doron Somer has founded the company together with his friend Nery. Doron is the dad of a 17 year old son with autism. He comes from a technology background but put his career on hold and started this company a few years ago as a solution for his son and others.
And just like the chat window showed, they're employing an army of autism moms as their customer service / sales team. These moms were early adopters / buyers of the device for their kids. They fell in love with the device and wanted to be spokespeople for it. They get to work out of their homes and help other special needs parents feel safer. That sure sounds like a win-win all around.
Ok, all sounds great so far, but what's the deal with the device, how is it different / better than others out there.
Well I was wondering the same thing. Doron talked me thru the device and then promised to mail one to me so I could properly try it out.
And here is what arrived.
Some of these pics & videos are from the angelsense website but my opinions that follow are all my own.
So there's this little tracker device.
It's basically like a one way phone with a gps in it. You know how you can use Find My Iphone or Find My Friend to track your phone or your friends phone wherever it is.
This is doing pretty much the same thing.
You preset your home location into it, you charge it overnight and then when your kid leaves for school in the morning you put it in his pocket or in his backpack. It attaches to the pocket or backpack with a little magnetic key. I'm not sure how it works, but it does. The magnet helps you take the metal cap off, you stick it in the backpack or pants pocket, you put the cap back on, and no one is getting that device out. You can see how it attaches in this video.
And then based on how you have set it up it then emails you and texts you when your kid leaves and arrives at any given location. When your kid arrives at a brand new location it will notify you, "In the last 30 minutes Kyle is a place you have not named. Please name it if it is visited regularly." And you click on the link, a map shows up of the unnamed location and you name it.
After about a week we had all Kyle's usually places named and prestored and here is how it works.
And when you get any of these notifications you can logon to the AngelSense site and see a breakdown of the whole day. The time he was in transit, how fast your spouse or the bus driver drove (!), and the time he was at each location.
|WIFEY DROVE 75MPH FROM HOME TO SCHOOL!! :-)|
Then you can click on any of the lines above and see a map of that location, or the route that was taken while in transit
It is a really smart and intuitive device and the website is extremely user friendly and smartphone friendly.
Ok, so what if there's an unexpected departure? He's not supposed to leave school until 3pm when wifey picks him up, but we get an alert that he left school at 11:19am.
Then you go on the site, and you go into runner mode, and you get real time updates to his location (updated every 10 seconds), and you can "call" the device and you can listen in to get a better sense of where he is. The sound quality on the listen in feature isn't great, but it's what you would expect if you had your phone in your pocket, but it gives you a sense of location (at school, indoors, outdoors, etc).
That's basically it. It really seems to be better and different than most of the other products on the market. We have several friends who have devices that their kids wear around their wrist or ankle all the time. But when their kids wander off the device doesn't automatically alert them. They have to know the kid is missing and then they call the tracking company and the tracking company calls the police. God knows how much time passes before all that takes place.
With Angelsense you get notified as soon as your child leaves or arrives at any location. If there's a deviation from his normal routine, you'll be notified pretty immediately and react accordingly.
It really is taking advantage of the smartphione gps technology.
Does it have some drawbacks? Yes. I wouldn't be honest if I didn't mention them.
1) If your kid likes to take off all their clothes and run away, you're out of luck because the device attaches to clothes. (However, Doron told me that there a new belt option that stays on even if the child takes off the clothes. I did not test this)
2) Sometimes the notifications are a little slow. My kid leaves home at 8:02 and I'll get a text at 8:06 saying he left home at 8:02... so a 4 minute delay... that might have to do with my cell phone provider, and 4 minutes is a long time, but it's still way better than most other gps products out there that don't notify you at all that your kid has gone missing. They can only track your kid after you find out from somebody else that he's missing. Also, AngelSense has a special early warning mode for high risk places that disables the smart analytics that filter out GPS errors and assures a shorter delay.
3) like a smart phone, the AngelSense battery only lasts between 12-16 hours. Because of the immediacy of the notifications That should be plenty of time to find your kid. But if your kid is a flight risk in the middle of the night you might have a problem. The battery takes about 4 hours to fully charge. We would take it out of Kyle's pocket as soon as he was home for the night and immediately charge it and get it ready for the next school day.
Again, 3 drawbacks that might be huge for some autism parents, but not for us.
For us it worked really, really well. It was just a great piece of mind to know where your kid was at all times. And to check in and listen in from time to time. Kyle had a class trip to the bowling alley one day and we were able to see when they left school, when they arrived at the bowling alley, and I even listened in and heard the muffled sounds of bowling balls and him laughing.
Piece of mind is an amazing thing for an autism parent...
And knowing that the co-founder of the company is an autism parent and that many of the employees are autism parents makes me feel better. AngelSense promises to continuously innovate and enhance the solution to protect special children. And Doron said that very soon additional exciting feature are coming out. He said "basically, unlike the GPS providers that have a static solution we continuously innovate and the parents get all of that for free. This is really just the beginning from our perspective."
So what does it cost?
Well for a limited time they are offering the device for free, your first month service for free, and then it's $39.99 a month after that.
I know, I know. Another monthly bill. But $40 a month equals $1.33 per day. So if you cut out your Starbucks habit and brewed your own coffee at home you'd have enough money to pay for this....and you'd have piece of mind.
And as I mentioned way back in the beginning. I have a full kit and a free year's service to give away to one lucky Autism Daddy reader from the US only who will be picked at random.
If you want to enter the contest...
Leave a comment on the blog or on the Facebook page with 1 sentence such as "Knowing where my child is at all times will ________ " and add the benefits of that to you and to your child. Add the hashtag #AutismDaddyAngelSense
If you feel like sharing share your "Knowing where my child is" sentence or my blog post review on Facebook/Twitter with the hashtag #AutismDaddyAngelSense.
After 2 weeks we will randomly select one winner from the US who left a "knowing where my child is" comment and used the hashtag.
And if you don't want to enter the contest but still want to leave a comment on my fabulous review
:-), you can still also do that...
That's it! Hope you enjoyed it!
If you're gonna shop Amazon anyway, can I ask that you enter Amazon by using the search box above? This way I can make a little money. This blogging thing has been awesome & life changing for me... but I must admit that it's taking up a lot more time than I ever thought... so if I can make a few bucks it'll make it easier for me to justify....Love you all! Thanks!!
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