The Car Wash

So, three years ago we took Reine with us when we went to the automatic car wash. It was something my other two kids have always LOVED. They thought it was the coolest thing ever! We thought Reine would like the colors the suds make.

It was the longest 5 minutes of pure terror that I have ever inflicted upon my child with the exception of blood shots (needles) and doctors appts.

The sounds that came out of her were enough to question if she had been taken over by a poltergeist. I could do nothing to stop the car wash or to make it go faster. I had no way to soothe her until the truck was done and the machine told us it was all clean. I sat and watched helplessly as I waited for her head to spin or her to pass out from pure exhaustion.I was so not winning the Mom of the year award. I honestly had NO idea that she would react to it like that or I would never have taken her. Needless to say, we both left it in tears. I vowed never to take her there again. Every time I went near it, she would cry and beg us to leave the parking lot.

A couple of months ago, Reine asked me to open the moonroof on my truck. It is one of her favorite things for me to do in my truck, as it opens all the back to the rear seat. Above her head, she noticed bird poop on my moon roof. She decided that we needed to take the truck to the car wash. Now, it took me 20 minutes and 2 meltdowns to figure out where we were supposed to take my truck.

My heart sank. My first thought was HELL NO!!!!! What if I scare the ever loving hell out of her again??? Once was enough to last me a lifetime. I told her we did not need to go to the carwash. The rain would wash off the poop eventually. Every day, a million times a day, for the next 2 weeks it was all she could talk about. When are we going to the carwash? Why haven’t we gone to the carwash yet? She was so hyper-focused on it. For the past year, we have been working with Reine to face her fears. I knew this was another fear that we could conquer together. I told her exactly what would happen and when to expect it.

As you can see, she enjoyed it and covered her ears from the loud noises it made.

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“Hug” Clothing

One of the hardest lessons I have learned about autism is it’s lack of consistency. What works for one person on the spectrum does not mean it will work for others. You can seriously go broke trying everything that you are recommended by other parents, specialists, and online. There is no “try it risk free” or “money back guarantee”.

When we saw our Occupational Therapist (OT) we were told that Reine MAY benefit from compression vests. A compression vest is a vest usually made of a silicone like or wet suit material. Some are weighted, some zip up and some have velcro closures to help tighten them. The goal of these vests is to apply a deep pressure to help calm someone on the spectrum. Some do not do well with the pressure. This is where the “try” it part come into play.

I was told to take a chance and order one. Upon my research into them, I realized 2 things…

1. They have a starting price of about $50 and go up to $150+ with some as high as $400.

2. They scream I HAVE AUTISM!!!! Reine is already becoming aware that she different from others in her world.She is also developing her own sense of style. These would soooo put a cramp in her fashion choices.

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Oh and so you know, you should only wear these vests for a couple of hours max.

I also found that many parents buy their children clothes several sizes too small and layer their children in them. Think Spanx type undergarments, 2 sizes too small. That worried me to be honest. There have been studies done on wearing Spanx type clothing that fits on a regular basis and injuries that result from it. And they fit properly. Imagine 2+ sizes too small. Reine’s pain receptors are different then most people. She would not be able to tell me that something was hurting her or uncomfortable. She would not honestly know.

I knew I had to think outside of the box once again. I am getting really good at thinking outside of the box with Reine.

I sat down and looked at pics of Reine, looked at her laundry, her dresser drawers, anything that she wore and even what she REFUSED to wear.

I noticed something, she LOVED tighter clothing.

  • Snug capris with a tank and a slightly form fitting sweatshirt was her must have choice of clothing for most of the summer.
  • Form fitting skinny jeans or leggings and a form fitting shirt were her fall pick of clothing.
  • PJs are always leggings and a form fitting shirt.

My Light Bulb Moment…..

idea light bulb

When we were at the beach in September, we got what I can only call a chemical reaction sunborn. We had to buy my middle daughter new clothes that she could wear comfortably. She chose tank tops that were made from a clingy material, super soft, and kept their shape incredibly well. She lived in them for almost 2 weeks while she healed.

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I began looking for them in Reine’s size. I also began looking at pants in the same or similar material. They were almost like the compression clothing that athletes wear. However they were not quite as tight. After some searching, I was able to find exactly what we were looking for.

  • Nylon/Spandex. It is a flexible, breathable fabric that holds it’s shape.
  • Polyester/Spandex AKA compression clothing for kids.
  • 100% Polyester Fleece

Reine LOVED the clothes. She started calling them her “HUG” clothing. I have made sure she is WELL stocked on them. They are in her exact size. The combo works incredible for her in regards to help her feel calm and relaxed. So much so that she asks for them if they are NOT offered to her.

Her fall and winter wardrobe has consisted of the following:

  • Tanks
  • Leggings
  • Long sleeve compression shirts
  • Arm warmers
  • Leg warmers
  • Skinny Jeans

PJs are the tanks and leggings. If she wears a regular shirt she wears a tank under it.

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This spring and summer will consist of the following:

  • Tanks
  • Capris
  • Yoga shorts
  • “Bike” shorts
  • Short sleeve compression shirts

If she wears a regular pair of shorts she will have a pair of her “bike” shorts underneath. If she wears a regular t-shirt, you guessed it, a tank will be worn underneath.

Even mermaids need their HUG clothes…

Mermaid

Mermaid with her HUG clothing.

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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Our Version Of “Music Therapy”

Taking Reine anywhere has always been….We will just call it an adventure.

Something I generally do not do alone. She is prone to wandering off, running away, throwing HUGE tantrums, racing and screaming like a wild child uncontrollably through stores, museums, zoos, farmer’s markets, parks. You get the gist.

People stop to stare, pass judgments, make snide comments under their breath as they glare at me. Some do not even bother to make the comments under their breath. I have been called me an unfit mother and told that my child is out of control more than once. I have been told that I need to “spank her” among other things by complete strangers giving me discipline advice.

Yes, I am the mother you see walking into the store whispering a prayer of protection around myself and my child. Looking at my grocery list and praying I can get in and out before the wildness starts. Removing whatever I need to from the list that is already a skeleton list just to ensure that I can make this trip as quick as possible.

I am well aware that you are glaring at me and my child by the way. I am also well aware that I am a DAMN GOOD parent. I have 2 older daughters that I prove that I do know what I am doing. One is finishing up her Sophomore in college at 18. The other is an amazing 10 yr old that LOVES to craft and to learn in anyway she can.

I am the mother that always walks away from others that are determined to make their disapproval of my parenting skills known, rather than confront you. Make no mistake, I am not afraid of your disapproval. I am afraid that if I choose to confront you, I will not be able to stop until you are in tears and attempting to apologize over and over for all the other times you have glared, made passive aggressive comments under your breath, suggested forms of discipline, or passed judgments on any mother.

I am also the mother that knows that there is a reason for her child’s behavior. She is not hyped up on artificials or preservatives. She is not tired. I have made sure that she has not been running errands all day. She is not hungry or thirsty. If we have to go somewhere, I make sure to have snacks and drinks that she can have. I plan outings for times and dates that I know the place we are going to will be less crowded. Yet, she still gets heavily overwhelmed. Her “acting out” is her way of saying I can not handle this environment. As her mom, I needed to figure out how to help her to handle the different environments of the world surrounding her.

What is causing the overstimulation?

With autism, ALL senses are always hyper aroused. They hear, smell, see and feel things all at once. Where you and I can chose to tune things out, they can not. Did I mention that is also usually amplified to them? Go to a store and take a moment to really look around and take notice of your environment. What do you see, hear, feel? Imagine it all at once, all the time, no way to tune any of it out. Imagine what you would be like in that environment.

When I asked our Occupational Therapist what she recommended that I do to help Reine with the wild child behavior, she had no advice to give me except to wait until we see our behavior specialist. Honestly it would have been great advice if we were not on a 9 month waiting list to see one.

Once again, I was left on my own to help Reine.

I decided to blog that night. What you may not know is that I blog with headphones in and listen to music. It is never loud enough that I can not hear others around me, just loud enough to tune out some of the craziness around me.

A light bulb exploded in my head….

I had an iPod Touch that I was not using at the moment. I immediately went online and started to look at kids headphones. Do they even make kids sport armbands? Can I retrofit one to fit her tiny arms? Will this even work?

When I told my Hubby I was giving our 4 (almost 5) year old daughter my iPod Touch. He was like “Are you freaking kidding me????”  He thought I had lost my mind! I was like “Nope, I have not lost my mind, but I am that desperate.”

I ordered the smallest and cheapest sport armband I could find. They do not make them in children’s sizes that I could find. My solution was to buy the smallest size in woman and to retrofit it. I found one for just under $4 online. The headphones I chose are children’s noise reduction headphones. They are not noise canceling. I need Reine to be able to hear me at a normal voice when we are out in public. My goal was for her to be able to always be aware of her surroundings but to have help blocking things out that cause her to become over stimulated.

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When we were ready to try out our music therapy, we picked a place that is one of the worst places for Reine, Michaels (craft store). My oldest and I had a full exit plan at the ready in case it did not go well. We have NEVER been able to be in this store for more than 3-5 minutes with Reine.

What transpired was INCREDIBLE and reduced me to tears in the store. Reine actually was able to stay in the store for an entire hour. No wild child, no racing, no wondering, no nothing. She actually went shopping and completely enjoyed herself. It was amazing to witness it.

My Hubby got to see the magic firsthand that night as well. We met him at a store. Reine was starting to go “wild” as soon as entered the store. I put on her music and she calmed instantly. My Hubby was in awe. She once again had a lot of fun.

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Update:

This post is apparently NOT sitting well with Music Therapists. I am being told I am misleading anyone that is reading this post because my daughter is NOT seeing an actual certified music therapist and therefore, we are not doing music therapy. I have also been told that I need to change the name of this post and my use of the term. I thank you for your comments and your emails. I have changed the name of the post from “Music Therapy” to Our Version Of “Music Therapy”. I will still continue to use the term music therapy throughout my blog.