The Angel Sense Guardian Device

I have been asked to write a little more about the Angelsense device I spoke about in the last blog. So this blog will be more about why I like this device over others we've tried and researched. To really understand why the Angelsense unit works better takes knowledge that I don't have, but I tried to find out some more information. 

Everyone I've talked to has had the same questions I do... why do we get false readings? Why does the car GPS seem to work better? How detailed is the information we can get? Anyway... most geographical GPS (like for a car or boat) units receive data from a constellation of 27 satellites, whereas the GPS devices we would buy for our children is based on cell phone technology. 

http://electronics.howstuffworks.com/gadgets/travel/gps.htm

Put into terms I could understand, a phone based GPS unit is like a two-way radio, it bounces a signal off the closest cell phone towers. 

http://electronics.howstuffworks.com/gps-phone.htm

Once the information has been received by the company that provides the service, the information has to be analyzed and transmitted to the individual GPS device. Based on what computer program receives and interprets the data as, is the information we receive. So, in a nutshell, the GPS we use is only as good as the program that is created to gather, analyze and transmit the data. 

Now, the reasons I love the Angelsense guardian device for several reasons. 

• It has been accurate so far (I don't expect that to change) and I get regular updates as to my little ones location:
• I can set a schedule based on location so I know when he arrives or leaves somewhere:

• In between locations, it shows me the transit direction, where he's been:

By getting regular updates, I can go about my day knowing that the device will let me know where he is at any time. I don't have to worry about getting a phone call saying he's missing. I get a tone every time he leaves a location. Then, God forbid anything should happen, the unit has a "listen in" feature. If we find that he's gone into a building and the GPS does not show him leaving, we call the unit and can hear any surrounding noises or voices. If we hear water running, we know he's in a kitchen or a bathroom. If he's we hear machinery, we know to look for machinery. 

So if you also need a GPS unit for your "wanderer" or "bolter", I recommend the Angelsense device. Check it out and see for yourself:

Angelsense.com

From a mother's heart - I would love to see a day when no child would "disappear" from where they are suppose to be, a day when no child would wander away. That is unrealistic, so, as long as our little guy "wanders", we will use Angelsense to keep an eye him.

YGod BlessY

An Angel in My Pocket

Today I wanted to discuss wandering, bolting or elopement. Whatever you may call it, it's when your autistic child comes up missing. Did you know that according to the last study done (in 2011) almost half of parents with children on the spectrum have reported that thier kiddos have wandered.

https://news.usc.edu/67144/wandering-poses-perilous-situations-for-children-with-autism/

It's such an issue that the CDC in the U.S. has issued it's own medical code to be able to track and research the issue. (You should let your doctor know of any wandering issues your child has had so it can be noted in her/his medical file.) The code is ICD-9-CM Diagnosis code 40.31 (until October 1, 2015, then it will change to to ICD-10-CM). This is considered a medical issue/diagnosis as well. It enables the parent to apply for a handicap placard for their child. This helps to get you closer to the establishment and hopefully prevent your kiddo from running in the lanes of the parking lots.

http://www.cdc.gov/ncbddd/autism/code.html

http://www.icd9data.com/2014/Volume1/V01-V91/V40-V49/V40/V40.31.htm

There are many, many companies out there that provide a GPS service. We've physically tried one and based on those results, have researched several others. After using, talking to others who've used them, and researching capabilities, we have been left... unimpressed and disappointed over the last two years. Until now that is. We've found a GPS device that not only works, but actually has works exceptionally well. We are very impressed.

The other devices have been known to send "false" errors. In other words, the device we used before was constantly telling me that my beautiful boy was not anywhere near where he was suppose to be. Which prompted several phone call that went something like...

Me:           "Hello, (teacher), can you see where Daniel is?
Teacher:  "Yes, he's doing (such and such) right in front of me"
Me:          "Ok, sorry to bother you, I just got a report that he was two blocks away." 
(Well that was embarrasing - the 1st time. Then it becomes downright frustrating)

Unfortunately those I've talked to that used the same device, and others devices too, had the same thing happen to them. That caused more concern than wondering all day if our boy/girl was where (s)he was suppose to be.

So, what have we found? It's called Angel Sense

http://www.angelsense.com

This is a new device which has been used in Israel as it's test market, and is now available in the United States. Co-founded by Doron Somer and Nery Ben-Azer, it has not officially "launched" but is available now. Developed by Doron Somer, who is the father of a beautiful 17 year old son who has autism. He knows what it's like to wonder about your child while you are not with them. His family has dealt with the "bully" and "belittling" factor (from adults even). He has worked in the field of technology for many, many years.

Seeing the need of his family, and all of our families too, he left his major job to focus on a GPS device that would actually work. After trying different forms, he created Angelsense, a guardian device. It has impeccable tracking (currently through the T-Mobile towers), it also has a system to ensure it doesn't come off your child's clothing without "you, the parent" wanting it to. It also has a "listen in" safety feature that allows you to hear what's happening in your child's environment. 

We've used this device for our little "wanderer" for well over a month now, and we couldn't be happier. We receive text updates any time he leaves his classroom, and we can tell when he arrives in the cafeteria, the playground or anywhere on the school campus. There are many possibilities in the future for this device, but the grass roots of it are "austism" and location.

From a mother's heart - I couldn't be happier. Now I can get things done without wondering if I'm going to receive a phone call saying Daniel's gone missing. I can't recommend it enough.

Our Autism Home... When School Starts

The first day of the new school year. I cannot believe that summer is gone...

As a mom of twins with autism, I've noticed that even though I've been counting the days until school started again, the house is now eerily too quiet. So, what do I find myself doing?

 The "Happy Dance"?           Take that long awaited nap while the house is quiet? 

Nope. I turn on the T.V. and start catching up on "those things"...

You know, those things you can't get done when the kiddos are home. I have no other point of reference, please forgive me if stereotypical kiddos do the same thing... every time I try to sit down and work on the computer, Daniel wants something. If I try to work on the bills, Anthony wants to snuggle. If I wait to lounge around with the boys, they want me to be a jungle gym.

Don't get me wrong... I secretly LOVE IT! I know my babes love me and need me. It does get annoying at times, I figured by the time they were almost 7 they'd want less to do with me. I admit that I wish it were a... little more on my timeline. (Ha! Ha! - right?)

Funny how you get so used to the screams, giggles, belly laughs, tantrums, and meltdowns. Quiet becomes... too quiet. I'm not watching the T.V., it's just a distraction so I can get some of the things done that I couldn't when the boys where home 24/7.

It's quite interesting what becomes normal in an autism home. For us it's water running in the sink while one boy plays in it. The other dumping food on the flood so the vacuum cleaner obsession can be quelled. Both in different rooms so you have to decide which fire to put out first. Having to put "Little Einsteins" on the iPad to quell the obsession with that. (It can only be on the iPad... not the T.V.)

As all parents learn, if it gets too quiet... MOVE FAST and find out why. If we're lucky, the boys have fallen asleep and are taking a nap. With ADHD that's usually not the case. There's Daniel climbing on the granite counter... jumping up and down. Anthony's decided it's time to find a piece of cardboard and chew on it and oh, how cute he's sharing... with the dog!!!

So many things happen around an autism home that parents have to actually find humor in it (if you don't, you'll lose your mind). You learn to realize that sometimes you just have to "let it go". No amount of raising your voice, re-directing behavior, saying "no thank you" will change some behaviors. When it's time you change one behavior for another (when they're ready of course).

For now, I can decompress a bit from summer, and try to find my routine. Knowing that my boys are getting what they need the most. A full day! They are so smart, curious, adventurous and determined to be busy, and at school they have that. A busy routine that they LOVE! They were so excited to go to school that Anthony actually got up at 3 a.m. (Luckily he fell back to sleep for a while.)

I'm so happy to know that they love school, their teachers, their "routines". They want so much to learn, and I'm so grateful for a wonderful teacher and staff that take extra care of our kiddos.

So, I'm back after a long, long summer break. So glad to be able to sit down and share.

From a mother's heart - God Bless you all! What kind of things do you get used to, and don't notice till the kiddos are out of the house?

No Excuse For Rude!

I've been working on today's blog for over a week now. First I was going to write about our recent vacation, but it didn't go all that well. Since I would rather highlight the good and/or positive things that happen in our lives with regards to autism, I thought I'd write about something else. Then I realized I wasn't being honest about our autism journey if I don't include the "ugly" parts too. After all, this is about learning, teaching and relating to others who have kiddos on the spectrum, have some form autism themselves, or are curious about it.

So, this is going to be about our not-so-good family vacation.

This spring we went to Disneyland for 6 days and 5 nights. We usually go at a time when the park is "relatively quiet" since the boys have ASD* and have different sensory issues. We've gone a couple of times a year for the past few years and it usually has great results. The boys usually "open up" and it becomes easier to communicate with them. They are more interested and engaged with us, in ABA** therapy and at school after we go. Because of our kiddos have special needs, we have developed a general routine when we to Disneyland and it usually helps us have a good time.

I was a little curious how this time would go since the DAS*** card for special needs had been changed (wrote about in last October's blog) the last time we went. This was our first full week of using the pass, last time we went, the pass for special needs changed midweek. I was hoping it would go better than the reviews I had been reading from other families. For us, the pass helped us most of the time, so I really have no complaints about the pass in general. I will discuss it again on another blog, what worked and didn't work for us (there could definitely be improvement to the pass).

We were told by someone on the "staff" that Southern California schools had "reorganized" their schools to take spring break at different times throughout the months of March and April. It certainly seemed true. It was the busiest we have ever seen it during any of our previous vacations.

When we got off the freeway, onto a road that generally takes about 5 minutes to reach our hotel... we came to a stand still. The boys "went off" right away because they knew where we were and couldn't understand why we weren't moving. It took us about 20 minutes to reach the hotel in start and stop traffic. We expected there to be an accident or something... there wasn't anything but a lot of traffic.

This year we weren't able to renew our annual passes online due to "technical difficulties" online, so we had to go to the ticket booth before we could even check into the hotel. The lines were long, the sun was very bright and there was very little shade. So... Daniel had an extreme meltdown - complete with crying, scratching, kicking, biting, everything. My husband was trying to redirect his attention in every way, but not without some very visible battle scars.

By the time we checked in and went to the park it was mid-afternoon. We headed straight to Disneyland's City Hall for our DAS passes for the boys. It was easy (unfortunately) to show the young lady what happens if either of the boys has a meltdown - my husband was our model.

My biggest complaint was that many people we ran into this time were plain old rude. People would stop in big groups - right in the middle of the street... "Stopped walking, right there and block traffic", instead of moving out of the way. Then they'd look at other people like it was where they were suppose to be. Just blocking traffic in a very busy intersection while hundreds of people found their way around. It wasn't like it was one group of people that did this... it happened every few hundred feet with different groups of people.

I could easily get past this if it was just my husband and I, but with kiddos who just don't understand why traffic, that is supposed to keep moving has suddenly come to an abrupt stop... well, needless to say, my blood pressure started to rise quickly. If that wasn't enough, we actually had many different adults - or what looked like they should've been adults - completely cut us off while we were walking. No "excuse me" or anything, just rude - pushing their way through, not even a second thought of the little kiddos they almost knocked down.

It's easy for me to get upset at people who are ignorant of special needs children. It's really easy to get angry with people who are rude. But, for me it's really, really easy to get mad at people who are both rude and ignorant of others and special needs kiddos. Maybe it's because I was tired and more ready for a vacation than I can remember being or what, but it seemed like It didn't matter where the we went there were extremely rude people.

Most days we went into the park early, tried to be calm and patient, but ended up going back to the hotel early in the day. We worked on school work in the hotel and would go to the pool or out for a short ride. For the first time ever, we came home without even going into the park the last day we were there. Even the boys were ready to leave. We were all definitely glad to be home.

From a mother's heart - I'm not sure if there were actually more rude people this year, or I just noticed it this time. Either way, it's seems to be a growing trend so - I'm going to look for way to keep them from stealing our joy next time.
God Bless! 
*ASD - Autism Spectrum Disorder; ABA - Applied Behavior Analysis; DAS - Disability Access Service;

Funny How Things Turn Out

Remembering the days when everything, well almost everything, on my to do list got done and there was usually time left over in the day. Getting up, making the bed, showering, going to work, etc. It seemed like my lists were always checked off when I was younger, rarely did I have to put anything off until the next day. Now I find myself making 2 or 3 lists of things to get done and I'm lucky if most of the items aren't pushed onto tomorrows list. Funny how things turn out.

At one time I was consumed by having everything in it's place. The house had to be clean and tidy. Then I married someone who wasn't that way. Clean - yes, but there was a tendency to "collect" things. Clutter actually turned out to be a blessing in disguise, it started me on the road to loosening up if things were out of order. As long as the house is clean, I don't completely stress out if it's cluttered. I've learned that anything that doesn't get done when I think it should, will usually be there to do the next day. Funny how things turn out.

When I was younger I had my life mapped out. I wanted to be married by the time I was 24, a few years later start a family. I initially wanted the "old idea of family" - a house with the white picket fence, the back yard big enough for kiddos and a dog or 2. A small garden in one corner. Since then I've learned that most things will not go the way you plan it, when it comes to life in general. Funny how things turn out.

There was a time in my life when I had to have every detail in my day, week and month planned. It had to be as "perfect" as I could get it. Well, of course I learned that nothing in this life is perfect. There are "perfect" moments that we are blessed to experience every so often. However, once you realize that nothing is perfect, the stress begins to lift. Funny how things turn out.

Like many people who start out in marriage, we tried to have our own kiddos. We weren't able, though not for lack of trying. Many years of raised and dashed hopes. But when we were finally introduced to our boys, all the sad memories faded away, a whole new life of hope invaded. Funny how things turn out.

When the boys were babies I had all these dreams of what it would be like, how they could have anything in the world they desired. What they would be like, what conversations we could have. Then they were diagnosed with autism and everything changed. Funny how things turn out.

At first I was "afraid" there would be so many things they'd never be able to do. That they'd be labeled and looked down on. Then I learned how much they could do. They began to show me their only limit, like any child, are the limits we put on them. Funny how things turn out.

From a mother's heart - like many people with special needs children, we've learned that they themselves are special.

Wandering is Scary for Autistic Families

For the last few years we've discussed the possibility of getting a family / service dog for the boys. Mostly to help keep track of Daniel, to keep him from wandering - help keep him close - or to find him if he does happen to slip away. We've researched many of the service dog programs, and to be honest, we couldn't afford most of them. There are many programs where you "fund raise" for 1/2 of the money, and the other 1/2 is donated, but it can still be as much as $13,000 or more.

We've gone back and forth on the topic of what's best for our family and when. We've tried a GPS monitor, but kept having different types of problems. We've gotten a handicap placard for when we go to a store, so we can park closer to the store - in hopes that if Daniel bolts, he won't run through the parking lot traffic if he bolts. We agreed that at some point we would most likely need to get him a service dog. Especially since he will bolt without a  second thought, and he is fast.

Like many autistic kiddos, he has no fear. No fear of traffic, no fear of something that draws his attention (which could be a shimmer on water), and no fear of people. He can't read facial or social cues, so he doesn't know that there may be someone out there who would have less than good intentions toward him. He may look at you after you call his name 5 or 10 times, but it doesn't mean that he'll come to you when you call. If you run after him because he's heading for a dangerous situation, he may think you're playing and start running too... away from you. These are just a few of the problems we parents of: wanderers, runners, or children with a "flight risk" - face every day.

As parents of children with autism spectrum disorder (ASD), we've learned that you not only pick your battles with your kids (and your friends and family too), but you really have to weigh out what will get attention and when. For example, our boys have ADHD (attention deficit hyperactivity disorder) and we are always being "updated" on the different programs that are happening, like soccer, gymnastics, etc. As much as I would love to put our little guys in these programs, there aren't enough hours in the day. They go to school for 29 hours a week, come home and have ABA (Applied Behavior Analysis) therapy for 11-1/2 hours a week. That's more than some people work in a week. At this point and time school and ABA win - hands down.

Recently there have been many young children with autism that have "gone missing" in the News. Some cases have happy endings, unfortunately many do not (one is too many to me). One case in particular has brought our attention back to the "dog" conversation and changed our minds about waiting. Avonte Oquendo - a 14 year old autistic boy, non-verbal, known to run. According to the news reports Avonte went missing on October 4, 2013 when he left his high school - unattended. Late January 2014 we learned he went home to Heaven, not to his parents. Many, many, many things went wrong that led to the death of this beautiful young man.

http://nypost.com/tag/avonte-oquendo/

We have agreed to get a dog and have it trained for our special needs and then have him licensed. After that we will again look into the GPS. As every parent knows, safety is of major importance in this day and age, no matter where you live. I'll keep you posted on how these things go.

From a mother's heart - having children on the spectrum makes you appreciate everything that your child learns and they remember. I pray that no child would ever go missing, and short of that - more people would become involved and help out the special needs members of their community to keep them safe.
God Bless!

A Dose of Reality

Over the last few months we've been dealing with issues of "reality" and preparation. My mother is 80 years old and has been battling breast cancer for several years now, had to be admitted to the hospital between Christmas and New Years.  She was very sick, and I admit, we thought it might be the end. (She's alright now, getting stronger every day). She was in the hospital for about a week, then moved to a rehab facility to help her get strong enough to go back home. She's very independent and won't hear of an assisted living facility (not to mention how she'd afford it).

This brought up all kinds of issues for my brother, my sister and I. None of us are in a position to be able to bring her into our homes and care for her. It made me think of how to, or if I even should, tell the boys if something had indeed happened to her. They know who she is - Nanny. They seem to be happy when they first see her. They'll "check her out" and then be on their way to whatever they were doing before she came in. Being autistic, I realize that they don't see her very often, would they understand "passing on"? I'm not so sure.

I began thinking about the possibility of something happening to my husband and/or myself. Who will take care of the boys? Where will they live? Do we have the right amount of life insurance? Savings? Will the boys needs be met? So many questions. I realized that for the last few years we had been talking about wills, trusts, guardianship, etc. Still unsure of everything we need, but we hadn't put anything on paper yet. So now reality had come our way... it's time to get a move on it.

Here's what I've found (so far) that parents should have in case the worst (GOD forbid) should happen (from the special needs parents point of view anyway):

1. A basic will - (free online at the following link):          http://www.rocketlawyer.com/
2. Apply for supplemental security income (SSI) for your child at:                      http://www.ssa.gov/applyfordisability/child.htm
3. Information for social security benefits for children:                                         http://www.ssa.gov/pubs/EN-05-10085.pdf
4. Information on social security survivor benefits:                                              http://www.ssa.gov/pubs/EN-05-10084.pdf
5. Temporary Guardianship papers:                                                    https://www.rocketlawyer.com/secure/interview/questions.aspx?document=34510908#q1      [so the person who assumes guardianship of you child has what's needed until the will is formalized]
6. Medical history & medical permission forms:          http://www.acep.org/medicalforms/
7. Child's Information:          Schedules, Routines, Medicines, Doctor's information, Legal Documents, agencies numbers and case worker names, school information, favorite toys, list of things that comfort, what stims are used & why (if you know), anything else that would be most helpful for your kiddos

This is just the beginning. You don't want anything left to chance - if you can help it. I think I'm going to start a notebook with dividers and simply add information to it as I go. That way, not only will it serve as a reminder for us, but make it easy to add things to it as we learn about them.

From a mother's heart - GOD willing nothing happens to us before our boys are grown and on their path (whatever that may be). Preparing them for everything we can possibly think of is just another way of helping them.
God Bless

Meltdowns...

The phone rings and it's the school's number - during the school day, and your kiddos are there... What's up? As the mom my mind automatically goes in a hundred directions before I even say, "Hello?". As a mom of autistic twins it goes to places I never would have even thought of before. I answered the phone the week before last to find out that Daniel was having a major meltdown. Nothing like anything he has previously had in his current classroom. He had been escalating for the past hour. Nothing that would usually help to calm him down had worked.

It was almost the end of the day already, so I asked my sister to go with me to pick up the boys. Since they are in the same classroom, I knew that if Daniel was "going off" that intensely, Anthony would be a mess. We went to the office, signed them out and headed for the classroom.

When we got there, the teacher, two instructional aids, the program psychologist and the principal were with there. The other instructional aids were with the other kiddos. Anthony's aid had taken him for a walk because he began reacting to Daniel. Daniel had become highly agitated and before he could "regulate" himself, his meltdown had escalated. It was almost an hour long meltdown. He had become extremely aggressive and was trying to bite, scratch, pinch, etc. anyone he could, including himself. He had never been self-injurious before, it had always been directed outward, to others that were within his boundaries.

One benefit to having your kiddos in a special needs classroom that's designed specifically for them (in our case autism) helps tremendously. Every kiddo and parent with autism knows that meltdowns can be a regular part of their life. Children in autistic classrooms have the benefit of the teachers and aids knowing a meltdown can happen at any time and usually does. They are trained to be able to help re-direct a child so that the meltdown doesn't escalate.

It had been years since Daniel had a meltdown that lasted more than 10-15 minutes. I think it's been more than a year since he's had a meltdown that couldn't be re-directed. Once a meltdown has really begun, all you can do is wait it out. For our kiddos there are three things that will usually start a meltdown: frustration over not being understood; over tired; or not feeling well.

Once we got home both boys fell asleep - exhausted. We did figure out that Daniel had been getting more aggressive in general since he began a new medicine. As he was increased on the medicine, he had difficulty going to the bathroom. Once we stopped the medicine, his demeanor changed for the better. Once he began going to the bathroom regularly again (which was just a day later) - he was back to his old self.

Letting his doctor know what had happened confused the doctor. Why? Because he had never heard of that reaction before. But we know that the only thing that really changed was removing the medication. So, he no longer takes that medicine. Everything is much better now, still looking for a replacement medicine, but not at the expense of our little guy feeling badly.

From a mother's heart - always remember that you are your child's best advocate. I don't care if the medicine doesn't list something as a "side effect", we're convinced it was the cause. Go with your instincts, especially for your kiddos. ASD,
God Bless