Wandering

This post is going to focus on one of my worst fears with Reine…..WANDERING.

For some reason, the topic of wandering and autism is not discussed with many families of children diagnosed with Autism Spectrum Disorder by their physician, therapist, or diagnosing doctors. 

But it needs to be. Here’s why…..

What is wandering? 

Wandering is defined as when a person, who requires some level of supervision to be safe, leaves a supervised, safe space and/or the care of a responsible person and is exposed to potential dangers such as traffic, open water (drowning), falling from a high place, weather (hypothermia, heat stroke, dehydration) or unintended encounters with potentially predatory strangers.

You will also hear wandering referred to as:

  • Elopement
  • Bolting
  • Runner

3 Classifications Of Wandering.

• Goal-directed wandering: Wandering with the purpose of getting to something (water, train tracks, park, an item or place of obsession, etc.)

• Bolting/Fleeing: The act of suddenly running or bolting, usually to quickly get away from something, a negative reaction to an event, anxiety, fear, excitement, stress or uncomfortable sensory input.

• Other: Nighttime wandering; wandering due to disorientation, boredom, transition or confusion; or individual simply becomes lost.

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AUTISM-WANDERING STATISTICS

Missing children with autism and other developmental disabilities do not fit the current criteria for AMBER Alert.

Let that sink in for a second. I will repeat that sentence again for you.

Missing children with autism and other developmental disabilities do not fit the current criteria for AMBER Alert.

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Because children with autism are often challenged in areas of language and cognitive function, it may be difficult to search for them, or teach them about dangers and ways to stay safe. 

  • Nearly half of all children with Autism Spectrum Disorder will wander at one point or another, regardless of the type of adult supervision. This is nearly 4x the rate of those not on the spectrum.
  • More than 1/3 of those that wander are not able to communicate their name, address, or phone number.
  • In 2009, 2010, and 2011, accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement
  • 2 out of 3 of elopers reported their missing children had a “close call” with a traffic injury
  • 32% of parents reported a “close call” with a possible drowning
  • Wandering was ranked among the most stressful ASD behaviors by 58% of parents of elopers
  • 62% of families of children who elope were prevented from attending/enjoying activities outside the home due to fear of wandering
  • 40% of parents had suffered sleep disruption due to fear of elopement
  • Children with ASD are 8x more likely to wander between the ages of 7 and 10 than their typically-developing siblings
  • Half of families with elopers report they had never received advice or guidance about elopement from a professional
  • Only 19% had received such support from a psychologist or mental health professional
  • Only 14% had received guidance from their pediatrician or another physician

Wandering usually happens because the child has….

  • Found something of interest such as water, a park, train tracks, an animal, or object.
  • They may love adventure or just running in general.
  • They may also be trying to escape or to get away from something that is over stimuli, such as loud noises, commotion, or bright lights, too many people.

Dangers associated with wandering include but are not limited to….

  • Drowning
  • Getting struck by a vehicle
  • Falling from a high place
  • Dehydration
  • Hypothermia
  • Abduction
  • Victimization
  • Assault

According to Autism Wandering and Elopement Lethal Outcome Cases during the years 2009-2011

  • Accidental drowning accounted for 91%
  • 68% died in a nearby pond, lake, creek or river
  • 23% were in the care of someone other than a parent
  • Lethal outcomes in ASD wandering/elopement in girls were twice as high than in boys.

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Ways To Prevent Wandering.

  • Have an emergency plan in writing, laminated, and always at the ready.
  • Have your child take swimming lessons with an instructor that specializes in training those with special needs.
  • Seek out the root cause of your child’s wandering and create strategies to help prevent the need to wander.
  • Teach your child about dangers.
  • Use social stories to teach your child important information about themselves and those that live with them.
  • Create a detailed wandering log if your child has had any previous wanderings. 
  • Get your child an ID bracelet.
  • Check to see if their is a First-Responder Facilitated Tracking Program in your community.
  • Install door and window alarms for your home.
  • Use Shoe ID tags.
  • Look into Guardian Locks
  • Temporary Tattoos for outings
  • Get to know your neighbors. Ask them to notify you IMMEDIATELY if your child is seen in the neighborhood without an adult present.

Please know that even with all of the above things in play, you can NEVER let your guard down in regards to wandering. There is no peace of mind or guarantee that any of these things in part or whole will stop your child from wandering or save their life.

The day Reine was diagnosed with ASD and SPD, I purchased an ID bracelet that I could customize to suit her and that she could wear 24/7. After searching for several days online, I chose Road ID for her bracelet. They offer different ID options. Most with customizable plates and badges. The one we chose for Reine is a silicone bracelet with a customized removable plate and mini badges. She LOVES the fact that she can change out the bands. I LOVE the fact that they are durable, have not molded, shrunk, ripped etc.  

I finally had to replace the customized plate on her ID bracelet this past week. It lasted from October 2014 until February 2015 with her wearing it 24/7.

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I am in NO way affiliated with Road ID nor was I compensated in anyway by Road ID. I just seriously LOVE their bracelets!

Want to see where I got my info on wandering from? Check out these sites…..

awaare
iacc.hhs.gov
pediatrics
missingkids
google

3 Months Later

It has been about 3 months since Reine’s Autism Spectrum Disorder and Sensory Processing Disorder diagnoses. I have spent countless hours researching, reading, listening to audiobooks, scouring online and thinking outside the box. Lots of trial and error. Somethings are working amazingly for us, some we are tweaking to find the balance. I know that I have barely begun to scratch the surface of it all.

We are on several waiting lists for Reine to be seen by various specialists. Each specialist decides if she needs to be evaluated by yet more specialists and which ones, what new recommendations we will be given, and if she is going to be diagnosed with something else. Each of our waiting lists seem to be between 4-9+ months long.

If you do not have patience, with Autism diagnosing, you will learn to have patience.

We have seen the following specialists so far….

  • Speech Pathologist
  • Pediatric Neurologist
  • Occupational Therapist

Today we added Pediatric Neuropsychologist to the above list. We were told that this appointment would be several hours long and very intense for Reine. They were not kidding. They tested, among other things, her intelligence, visual perception, language, memory, learning, attention, and executive functioning. Basically this means they did a battery of tests that measures Reine’s cognitive skills and overall brain functioning.

We will have a written report of today’s visit and recommendations from the Pediatric Neuropsychologist in 2 weeks.

Autism is no longer divided up among different diagnoses like Autism, Aspergers, etc. It all falls under one main category now…..Autism Spectrum Disorder (ASD) with 3 main levels.

There are 3 main levels of ASD. 

Level 1 Requiring Support

  • Difficulty with social situations.
  • Difficulty in switching between activities.
  • Able to speak in full sentences.
  • Attempts to carry on conversations but is not sure how to continue with the conversation.
  • Has a hard time making or keeping friends.
  • Issues with organizing and independance.

Level 2 Requiring Substantial Support

  • Issues in verbal and nonverbal communication.
  • Social issues even after support is in place.
  • Limited social interaction.
  • Inflexibility of behavior.
  • Issues with change.
  • Noticeable behavioral issues.
  • Difficulty changing focus or actions.

Level 3 Requiring Very Substantial Support

  • Severe issues with verbal and nonverbal social skills.
  • Very limited initiation of social interactions.
  • Limited response to others.
  • Inflexibility of behavior.
  • Extreme difficulty with change.
  • Repetitive behavioral issues interfere with functioning of daily life.
  • Intense issues with focus or change.

Reine is considered to be Level 1 and Level 2 on the autism spectrum levels. 

Changes we have seen in Reine since diagnosing began.

  • She is able to cut with scissors while holding her hands in a “normal” position instead of upside down and side ways.
  • She no longer races away from us in public settings such as stores, malls, and in other public areas where there is a lot of stimuli. We have not tried going on walks or playing in parks because where we live. It has been too cold here for that. I am not going to lie, 20-30 degree weather just doesn’t do it for me! We will try these this spring, summer, and fall. Hopefully these will be amazing experiences for her, as they have not been in the past.
  • We are seeing less “violent outbursts” from her as we are able to stop it more and more and help her to figure out what she is trying to tell us. However, running upstairs and / or screaming are still happening.
  • She is beginning to write her letters. She will watch us write them on a piece of paper and then she will write them on her own piece of paper.
  • Reine has to have some form of a second noise distraction on. By this I mean she will play a game on her big sis’s laptop. The game will have music of some form playing. She will then have to have a second form of noise on the laptop. It can be music, movie, or video playing in the background etc. It must be louder than the game’s music, but she must still be able to hear it. It gives us around her a headache. For her, it appears to be soothing. She will often allow me to turn on music via bluetooth and be content with just that noise and the game. It depends on her mood.
  • She is craving school. When we do our homeschooling, she will do a minimum 20-30 worksheets of various kinds in a sitting. It can be anything from cutting (though she will only cut the thick lines), to coloring, to dot to dots, to pasting, sorting, doing puzzles, etc.
  • I am not allowed to read her books of any kind at the moment.
  • Reine tries to figure out what people are saying and repeat it or match the rhythm of the words they are saying or singing at the same time they are being said. It comes across as a mumbling. If she is watching a movie on the laptop, she will stop it and repeat a sentence or scene over and over again for 20+ minutes at a time. Repeating the lines with the characters.
  • Scripted play is almost constant now.
  • The need to chew is stronger now. She is chewing her fingers until there is indentations on them if I can not get her hew sticks or her chew necklace to her in time. She has gone through 2 chew sticks this month.

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Disney On Ice Worlds Of Fantasy

An AMAZING friend of ours called me the other day and asked me if I had plans with the family for the coming up weekend. She gifted us with 4 tickets to take Reine to see Disney on Ice Worlds of Fantasy. This is a HUGE luxury for us! If you follow Simplicity Redesigned you know that like most people in the world, we do a LOT of staycations. Any extra money we have right now seems to always have a place to go and it is rarely for things like this. Sadly, these things always seem to come when we have nothing left in the budget.

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We first had to decide who was coming and who was staying (family of 5 gifted with 4 tickets). Our oldest opted to stay home and catch up on sleep, write papers for school, and just enjoy a quiet day at home. With that part figured out, next came the planning for what was going to be needed and to scope out where we were going to see the show. For most families planning for an outing like this is easy. Warm clothes, spending $$, and just go have fun. For us, it is a little more involved.

I found our seats online at the arena’s website. We are near the end of a row. This means an easy escape for us if we need to leave without causing a scene. I was advised by someone who just saw a Disney On Ice show that they were flooded with spotlights where they were seated . It was VERY bright for their little one’s eyes. So, we decided to also bring sunglasses with us in case the same thing happened to us. We also be brought ear plugs incase the iPod and headphones are not enough for her to help with the overstimulating and loud noises.

I also called the arena to see about taking snacks with us as we do not eat processed foods. I know that my kids will get hungry smelling and seeing the foods that others will be eating there. We were told that as long as we do not pack too much, we will be fine. LaraBars, granola, applesauce, and OJ was on the snack menu while sandwiches, grapes, milk and another thing of OJ were kept in a cooler in my truck for us to eat as dinner after the show.

Our seats were in the 7th row from the ice. It was PERFECT for us. We were at an angle so that we could see perfectly over the rows in front of us and still see all the details of the show. Reine handled the people working the concession popcorn and cotton candy through the arena beautifully. They are the workers that walk around with the $15 bags of popcorn and $12 bags of cotton candy on long polls. They do a lot of rather loud yelling to get the attention of the kids and parents that are in the stands waiting. I do have to say that I was very surprised to see a fully functioning bar serving hard alcohol and beer at a Disney function but it was there and parents were lined around the corner to get their drink on.

First up was Minnie, Mickey, Donald Duck, and Goofy. Reine recognized them and thought they were great. They were followed by Cars. Although Reine saw the movie once, she LOVED watching their skit on the ice.

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Next came The Little Mermaid. Although they changed the storyline, Reine could not take her eyes off and did not question why Ariel was a mermaid with 2 legs. We have tried to get her to watch the movie a couple of times and she has not shown any interest in it. This however, had her from the first ice skater. I tried her once again with the mermaid series this week. She is mesmerized. Another mermaid show / movie to add to the mermaid mix. Score!

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Tinkerbell and many of her fairy friends made their appearance after the Little Mermaid was done on the ice. It was full of movement and activity that caught her attention from the start. She recognized all the characters and was smiling through it all. They had the most props on the ice as well. For Reine, that was amazing.

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Last up was Toy Story 3. Here she seemed to really come alive. She danced and got excited by a couple of the characters in this one. There was Rex AKA just a regular T-Rex to her, Barbie and Ken who she watches on Netflix and plays with in her house, and Mr. and Mrs. Potato Head. There were green soldiers that “marched” and did a cadence type number. There was a lot of movement and colors that caught her attention.

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If you ask Reine for details about the show, try to have her tell you about the props used, or ask her who her favorite character was, she will only stare at you like you are speaking to her in a foreign language. Maybe you are. Although she will not be able to answer any of the questions, she would gladly introduce you to her  newest mermaid we have added to her ever growing collection of merfolk.

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We truly enjoyed watching her take it all in. 

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We also shot a ton of videos that you can watch via Simplicity Redesigned on Instagram.

Go Bag

I must give credit where credit is due. This one is all my Hubby’s doing. The night he saw the “Music Therapy” in action, he told me to create a “Go Bag” and to NEVER leave home without it. The concept of this bag is similar to a purse or a child’s diaper bag. It goes with us everywhere we go and is filled with things that are geared towards Reine’s autism.

The Bag
When we first started the Go Bag, I used a Jansport backpack. Everything fit in it, but it was honestly just too much bag for us to use for this purpose. It was not easy for Reine or us to find the things we needed quickly and there was just way too much room in it as well. I decided to find something that would suit us better.

My Bday gave me the perfect excuse to shop.
Vera Bradley gave me a $20 coupon for said Bday.
The Vera Bradley Outlet store gave us the perfect bag for 70% off the original price, plus the coupon.

The bag I chose is the Backpack Tote. I looked for a bag that had separate areas for everything, but was not bulky or heavy and one that would stay on my shoulder when I needed to stay there. I do not believe in wearing a backpack on both my shoulders. I am a one shoulder backpack wearing kinda of girl.The Jansport always slid off my shoulder. I needed the weight to be as evenly distributed as possible because lets face it, I am the one carrying it along with everything else.

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The Contents
The Go Bag carries items that to us pack some serious superpowers. They are able to take a wild child that is overstimulated and help her to remain calm, relaxed, and able to enjoy the world around her. It is amazing to see her like that. What does this bag contain?

Go Bag

1. Waterproof Carrier For the iPod

I always keep a waterproof bag and a Ziplock type bag in the Go Bag. I have learned that weather can be unpredictable. If we are caught in a storm or heavier rain, we can throw the iPod into it and keep it safe and dry.

2. Liquid Timers / Glitter Wand

These things are amazing for calming her down and relaxing her. She can watch the oil as it drips various colors from one end to the other. The glitter wand is the same concept except with glitter and a hidden picture floats along the tube also. We have used these along with the music in VERY over stimulating situations with great success.

3. First Aid Kit

This one is self exclamatory. There are band aids, essential oils, paper towel discs, cotton pads, Q-Tips, hand sanitizer, and antibacterial wipes. If you have a “boo boo”, I should be able to clean it, disinfect it, and cover it up with ease.

4. Battery Charger / Power Cord For The iPod

This one also self exclamatory. If we are out and about for longer than expected and the battery is low….Yep, this is a must.

5. “Music Therapy” Items

I think you all know what these items are. iPod, headphones, armband.

Occasionally I will also bring a book and or a tablet / Kindle.

If we are going somewhere like testing or to doctor appts where you are at their mercy for however long they plan on holding hostage, I bring one of each for my 2 youngest. Tablet and Kindle are loaded with books and educational games (Gotta love homeschooling). They will trade off or share them as a way to pass the time.

I keep the contents of the Go Bag streamlined and easy. These are things that she does not get to see, play, or interact with any other time, making them special to her.

Her new favorite thing is to sit in the cart and either watch the different timers or stare at the store’s ceiling mesmerized by the piping, fans, lights, etc while listening to her music.

Reine chilling out in a shopping cart mesmerized by the ceiling of the store we were in.

Reine chilling out in a shopping cart mesmerized by the ceiling of the store we were in. Behind her is the original Go Bag that she will often use as a pillow to lean on.

 

 

My Response To A “Musical Therapy” Email

I was recently sent an email from someone who read my post about Music Therapy via Tumblr. In the email, they that had an issue with me using the term “Music Therapy” in regards to Reine and her Autism as we are not seeing a music therapist. I wanted to address why we call what we do with Reine “Music Therapy”. My hope in doing this in a post is to give clarification to ANYONE that reads Simply Reine and questions our use of the term “Music Therapy”.

Here is the email that was sent to me…..

Dear Simplicity Redesigned,

I was reading a post you recently posted on Tumblr about taking your daughter to Toys R Us and how much of a success the trip was. Congratulations! However, I was troubled by your description of using music as a coping mechanism as “music therapy”.

Music therapy is the “clinical and evidence-based use of music to accomplish individual goals within a therapeutic relationship by a credentialed professional” according to the American Music Therapy Association. As a music therapist, I wanted to reach out to gently correct your use of “music therapy” as (from what I read) your daughter is not working with a board-certified music therapist and the use of music is not within clinical goals or a treatment plan.

Although I don’t doubt your daughter and family have benefited greatly, describing it as “music therapy” is incorrect and misleading. Better terms might be “audio therapy” or “iPod therapy”.

Thank you for your time and for the thoughtful posts you share. I look forward to reading more.

Best,

Their name was given here. I am choosing to keep it Anon.

Here is my response…..

When Reine was first being diagnosed with ASD and SPD, I spoke to the specialists who were diagnosing her about what we were going to try with the iPod. I was still waiting for some of the items to arrive and I wanted to see if I was on the right path with helping Reine in regards to her being constantly over stimulated in public settings. My biggest concern is for her safety. The specialists were the ones that told me it was in fact a form of “music therapy”. We are by no means done with her diagnosing. As of right now we are on 3+ waiting lists to see other specialists (each one 9+ months long). These specialists will decide if there is anything else she will be diagnosed with, what therapies she will need, and if she is to be placed on any other waiting lists.

I will admit that I am ignorant in many regards to my daughter’s autism, sensory processing, and about autism in general. I am just scratching the surface of it all, as we are new to navigating into her world. But one thing I pride myself on is researching things.I thought that I made it VERY clear from the beginning that this is “OUR FORM” of what we call “music therapy”.

Just like many things in life, there are different variations of things. I will have other posts to come, where I am once again doing our own versions of things that have been recommended for us to do.Are we seeing a music therapist at the moment? No, we are not. Will we be within the next year? No idea. But I will continue to research more ways to help my daughter and us navigate. When we went to see the Occupational Therapist, we were told that we are already doing or are about   to do everything she would have recommended for us to do. We go back to see her in about 4-6 months to be reevaluated. Again, you will see posts soon about our version of various OT charts and recommendations for things that we have tried that will have the same names as other possible therapies.

You are more than welcome to call it a coping mechanism. I even agree to a certain point. Coping mechanism by definition is an adaptation to environmental stress that is based on conscious or unconscious choice and that enhances control over behavior or gives psychological comfort.Reine’s coping mechanism was to run away, scream like a banshee, throw tantrums, flip grocery carts, destroy store displays and to become a wild child in all senses of the word, just to name a few of her behaviors. We  have even been asked to leave stores several times because of her behavior.My coping mechanism was to come up with a way or ways to figure out what I could do to help my daughter as she attempted to navigate into our world. What we did according to the specialists, was to give Reine something to focus on to help her drown out some of the over stimulating factors for her and to allow her to remain in a more calm state.

Audio by definition is an electronic, optical, magnetic, physical or other technical representation of sound. Many consider audio to be things like passages / books being read or white noise such as waterfalls, crickets, storms, waves crashing on a beach.

Music is using sound, usually including rhythmic, melodic and harmonic elements.

Therapy is the treatment intended to relieve or heal in part or whole of a disorder.

Reine listens to music on her iPod yes, but if the iPod breaks, it may not be replaced with another iPod. She does not listen to audio, but to actual music. And we do consider it a form of therapy for her.

I have decided that I will continue to call it “music therapy” despite us not seeing a trained music therapist.

I will say that if you want me to change the name of “music therapy” to something else…..

This is one thing that we will have to agree to disagree on.