Reine’s Weighted Blanket

Our OT suggested that Reine might benefit from a weighted blanket. I had heard of them before, but had no idea what purpose they served to those on the spectrum. We were told that they provide a slight pressure, almost a hug like feeling. They are used by many to help soothe and sleep better. They are weighted depending on the person’s weight.

As the OT was writing her preliminary initial thoughts and recommendations for us, I quickly looked them up on my phone. I was in sticker shock to say the least. Many start at $90 for a small one (AKA lap blanket) and go up from there. Some as high as $250.

When the OT came back into the room, I asked her about making one (Mom In Law is an AMAZING quilter). I saw what seemed like a thousand DIY tutorials on them in my less than 5 minute search I had just done. I was surprised when our OT nicely said she does not recommend the homemade ones as they can pose health risks. She said many are not weighted properly and if one of the pockets were to get a hole in them, they would pose a choking hazard. OK, I can see her point.I even agree with it. So, time to think outside of the box.

I could not fathom paying over a $100 for something that may or maynot work for my daughter. There is a reason they say when you meet one person with autism, congratulations, you met one person with autism. Each person on the spectrum is different.You never know if what works for one person with ASD will work with another.

So, I started to look at weighted blankets sold from reputable autism sites.I knew that if this did not work, I was going to be stuck with a blanket so I had better like the design, print, style, size, and color. I happened to look down at my lap at that exact moment. I was snuggled into a throw blanket. Do they even make “weighted” throw blankets? Could this even be a possibility? Well yes, yes they do make them.

I did an online search for heavy throw blankets. I looked at the overall shipping weight generally listed under the description of the product.Some that claimed to be heavy were only actually 2 lbs. I needed to be between 3-5 lbs for Reine according to our OT. Imagine my surprise when I was able to find one that weighed 4 lbs and was less than $40. My bank account cried in delight. I know it would have also jumped for joy, sang at the top of it’s lung and placed me on a pedestal if had it actually could. I know wishful thinking, but seriously the price was awesome! The blanket is made of polyester and is a woven two-ply faux fur. I had 3 color choices of black, gray, or white. I opted to go with black. Remember I needed it to be able to use it in case she did not like it. The throw is 60×50 inches. Not a bad size at all, especially for a 5 yr old. It appeared to be super soft with a fur like texture that I hoped Reine would LOVE. I ordered it and prayed. The day it arrived, Reine was in INSTANT love with it. It has been the perfect snuggle, calm down, falling asleep blanket this house has ever used! The only con for us is that it is dry clean only.

Link to our weighted blanket can be found here.

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I also recommended it to a friend to try with her son that is also on the spectrum. She was just as hesitant as I was about it, but she bit the bullet so to speak and opted for the white blanket. Her son is in LOVE with it too.

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I think I maybe on to something here.

“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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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.

 

 

The Newest Face Of Autism

This is the original blog post I did on Simplicity Redesigned about Reine’s autism. I thought it should be shared on her blog as well.

Autism Facts….

It is hard to turn on any form of social media and not hear the word autism in one way or another. It is estimated that 1 in 68 children are born with some form of Autism Spectrum Disorder (ASD), often occurring more frequently in boys than girls (as in boys are 4x more likely then girls), according to the CDC. Most are diagnosed around the ages of 3-5 years old. It is often first noticed by the parents or primary caregiver of the child. However, having it diagnosed earlier than 4-5 years of age is tricky, as it is often downplayed by pediatricians and or caregivers as “just a phase” or a minor developmental delay.

According to the CDC, Autism Spectrum Disorder is broken down into 3 different types:

  • Asperger’s syndrome
  • Pervasive developmental disorder, not otherwise specified (PDD-NOS)
  • Autistic disorder

Autism affects 3 main parts of the child’s life:

  • Social interaction
  • Communication — both verbal and non verbal
  • Behaviors and interests

According to The National Autism Association these are the most common signs of Autism.

SIGNS OF AUTISM:

  • No big smiles or other warm, joyful expressions by six months or thereafter
  • No back-and-forth sharing of sounds, smiles, or other facial expressions by nine months or thereafter
  • No babbling by 12 months
  • No Gesturing (pointing, waving bye-bye) by 12 months
  • No words by 16 months
  • No two-word meaningful phrases (without imitating or repeating) by 24 months
  • Any loss of speech or babbling or social skills at any age

EARLY SIGNS OF AUTISM:

  • Doesn’t make eye contact (e.g. look at you when being fed).
  • Doesn’t smile when smiled at.
  • Doesn’t respond to his or her name or to the sound of a familiar voice.
  • Doesn’t follow objects visually.
  • Doesn’t point or wave goodbye or use other gestures to communicate.
  • Doesn’t follow the gesture when you point things out.
  • Doesn’t make noises to get your attention.
  • Doesn’t initiate or respond to cuddling.
  • Doesn’t imitate your movements and facial expressions.
  • Doesn’t reach out to be picked up.
  • Doesn’t play with other people or share interest and enjoyment.
  • Doesn’t ask for help or make other basic requests.

Some children with autism appear “normal” before the age of 1 or 2 and then suddenly “regress” and lose language or social skills they had previously gained.

Many children with autism also have one or more of the following:

  • Fragile X,
  • Allergies
  • Asthma
  • Epilepsy
  • Bowel disease
  • Gastrointestinal/digestive disorders
  • Persistent viral infections
  • PANDAS
  • Feeding disorders
  • Anxiety disorder
  • Bipolar disorder
  • ADHD
  • Tourette Syndrome
  • OCD
  • Sensory processing disorder
  • Sleeping disorders
  • Immune disorders
  • Autoimmune disorders
  • Neuroinflammation.

Each child will have their own version or pattern of ASD. Meaning that no two children on the spectrum will be alike.

In 2011, a study conducted by the Interactive Autism Network through the Kennedy Krieger Institute found that 49% of  children on the Autism Spectrum have a tendency to wander from their “safe” environment according to AWAARE Collaboration.

  • 33% of these children are rarely able to communicate their name, address, or phone number.
  • 66%  reported their missing children had a “close call” with a traffic injury.
  • 32% reported a “close call” with a possible drowning.
  • 50% of parents with children that wander were never told that this is a common occurrence by health professionals.

What causes ASD?

No one is exactly sure what causes autism, but here are some of the most debated theories:

  • Vaccines
  • Household chemicals
  • Illness
  • Antibiotics
  • Medications (non antibiotic medications)
  • Industrial cleaning chemicals
  • Nutrition of Mom to be
  • Nutrition of child
  • Genetics
  • Environmental pollutants
  • Heavy metals such as Mercury

Here is an example of what someone with ASD’s  world looks and sounds like.

Why am I writing this post about Autism Spectrum Disorder? Because I would like to introduce you to the newest face of ASD…..

My 5 year old daughter Reine Kaydn.

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Our Story…

Reine was born at 36 weeks, weighing just over 8lbs. It was a very high risk pregnancy filled with enough drama to create an award winning documentary. Needless to say, the drama did not end directly after her birth. Throughout her pregnancy I was on multiple HIGH doses of medications for Gestational Diabetes and Compound MTHFR (my blood clotting disorder). Thankfully, my gestational diabetes went away almost immediately after her birth, but I continued on the medication for my MTHFR. Since the medications were deemed safe for pregnancy use, I was advised that they (the medical specialists) assumed it was safe for me to continue on this high of a dose while breastfeeding. However, NO studies had ever been done on the effects of blood thinners and breastfeeding to their knowledge.

She was tongue-tied at birth which did not allow her to nurse properly. She was given formula until they preformed her surgery at 3 days old. I breastfed exclusively until Reine’s weight dropped under the 6 lb mark. We were not sure what was going on, so I breastfed and supplemented with formula. Her weight continued to decrease however. We were in our PCP (family doctor) every 2-3 days for weight checks and then daily. I was watching my daughter die in front of my eyes with NO idea what could be causing it or what to do to stop it. We were all baffled by this. Her color began to turn to an ash grey. She slept a lot.

I went into ICU for 10 days just before Reine turned 4 months of age. I asked that I be bound as I was going to be given too many things that would pass through my breast milk and potently kill Reine if I continued to nurse her. She became solely bottle fed at 4 months of age. Within one week, she gained an entire ounce. She never looked back in terms of her weight gain. By 5 months, the difference was incredible in our little girl, she came to life. To this day, I think it was the blood thinners that caused us to nearly lose Reine. I do not have any valid proof though.

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Obviously, at 6 months of age, I noticed that Reine had some developmental delays. I did voice them with my PCP, but was not too concerned as she had spent so much time fighting for her life, she was now thriving. I convinced myself that it was normal for her to have these delays. By the time Reine was a year old, I started noticing the developmental delays were still happening. I tried talking to our PCP and my family about what I was seeing. They all had their reasons or excuses for her delays. At 1 1/2, the delays were still there with other signs that something was just not quite right with Reine’s development. I again voiced my concerns and was again told to stop seeing things that were not there. This continued on for the next 4 years. As I voiced my concerns, I was met with judgments and opinions instead of support.

I watched as my child developed in ways that my other two children did not. She continued to miss milestones and was IMPOSSIBLE to potty train. She was often high strung and “out of control” more times then I could count. She still is. Especially in public settings or with a LOT of people in our home. I was judged by family, friends, and complete strangers as a parent that could not control her child, who let her get away with everything, who needed to be more stern, and definitely did NOT know how to discipline her out of control child that ignored people on a regular basis. I always needed to be more this and more that. It is was always my fault. I had let too many things go too far and for too long was often said to me. When she spit out her food and I stopped yelling at her, I was judged. When I stopped trying to force potty training on her because it was NOT working, I was judged. When I let her throw her tantrums in public and waited until I was able to safely pick her up and hold her instead of disciplining her, I was judged. I let things spiral too far out of control, I had spoiled her to the point that I had a complete and utter spoiled brat.

I was made to feel like I was an incompetent parent, and my daughter was nothing more then a completely spoiled brat.

I had NO support from ANYONE except my oldest daughter. She did not judge me, she saw what I saw. She was just as frustrated with everyone else as I was. To this day, she continues to help me wrangle Reine when we go out into public. She helps soothe her when she is just so far “out of it” to the point of uncontrollable tears and Reine begins racing around the grocery store screaming as people stare and walk away from us, shaking their heads in disbelief , disgust, and disapproval.

I am not even sure what I my Mother In Law( MIL for short) thought of me the day I told her NOT to allow Reine to play in the park when she took her and my middle daughter out for a walk. I told her that without a second adult there, it would become a VERY dangerous situation immediately as Reine takes off and does not listen to you when you call her name. I know that she left angry with me that afternoon and returned frustrated and in awe because she chose to ignore what I said and took her to the park anyway. When Reine did NOT listen to her and took off immediately, she understood my warning. However, I was still judged as a parent for my lack of disciplining my child by both her and my Hubby as a reason that Reine could not be taken to the park. I am after all her primary care giver.

*Please note that my MIL finally had her AHA MOMENT when I watched a little girl the same age as Reine for a day this summer. It was UNREAL the difference between Reine and this little girl. My MIL began to see what both myself and my oldest saw in Reine. She slowly came around to the realization that I was right and Reine may actually have ASD and SPD. Her support has been AMAZING, much appreciated, and very much needed.*

When Reine did not sleep for days sometimes, I was told I was too nice of a parent because I allowed my child to get away with this. I was told I should just remove EVERYTHING in her room except her mattress, put a lock on her door and just lock her in her room alone and go sleep. Basically, leaving her to her own devises. I instead chose to stay up with her those nights and pretended that I was able to function on no sleep for 72 hours at a clip. My oldest daughter again would try to stay up or take turns keeping an eye on Reine when I was no longer able to stay awake due to too many days of lack of sleep. I considered this an amazing bonding time between us. We snuggled constantly. She was almost always a happy baby, toddler, and now preschooler.

I would constantly show those that I was closest to and our PCP lists for ASD and say “She fits into so many of these lists in different variations. I think she has ASD.” I got met with skepticism and judgement in return. I began looking into sensory issues as I was also seeing a lot of sensory issues with foods. Spitting out foods is second nature in this house. I often tell her that she needs the foods not the garbage can. It will not grow big and strong like her.

No amount of discipline would change what we were and are going through. My frustration was at a boiling point this year. Not with Reine. It was with those around me and their lack of support. I have not been back to my PCP since Reine was 3 1/2 years old. She sternly lectured me on Reine not being potty trained yet. I was not doing my job as a parent. I also allowed her to get away with way too many things.  I was actually neglecting my daughter and it was bordering on child abuse.

 SERIOUSLY????

THAT WAS IT. I WAS DONE WITH IT ALL. THE JUDGMENTS, THE DISAPPROVAL, THE LACK OF SUPPORT.

I raised 2 other children. One who graduated at 16 years of age, skipping her junior year of high school, graduating with high honors and is now a Sophomore in college majoring in Bio Chem / Pre Med. She is potty trained by the way, has been since she was 14 months old. Oh, and in case you were wondering about my middle daughter…yeah she is also potty trained. She figured it all out at 2 years old. BOTH of my other two daughters know their name, have listened to me as much as kids listen to their parents, didn’t race around stores screaming, had NO issues with going to the park with just me.

I made a list of all the things that I noticed where different with Reine than my other two children. I know that children are not the same and they develop differently and at different times.

Here is my actual list I compiled for my then 4 1/2 year old daughter…

  • She missed milestones constantly.
  • Her speech is still hard to understand.
  • Her pain receptors are not normal. She does not feel pain like most children. (Example would be she can fall and scrape up her knee or leg pretty bad and she will be like ouch. No tears. There is blood everywhere. The visual of the blood will scare her but the pain seems unregistered)
  • She lines things up in certain ways and repeats things over and over again. (Example is a ribbon. She winds it up in a coil, unwinds it and rewinds it. Blocks would be another example. Instead of building something with them, she creates patterns and rows with them. A block is not play food in her kitchen. It is only used for creating the pattern and rows.)
  • She plays by herself a lot. Even when another child her age is here. She prefers her own company.
  • She only plays with certain toys, certain ways. If you disrupt or try to show her another way, it is full meltdown. (Example would be play dough. I make several colors at once. She will only play with ONE color. If you take away that color and hide it, she will NOT play with another color.)
  • Strangers are still a NO with her. If you are not in her inner circle, she will try to curl up in a ball, cover her ears if she has no where to hide.
  • Loud noises such as lawn mowers next door, week wackers, car alarms down the street, blow dryers, certain music, wind, toys with audio in them, people slightly raising their voices, crowds of people, etc cause her to cover her ears immediately or she will run and hide.
  • She has a very hard time looking at you in the eyes or concentrating on your face.
  • She has habits that she must be allowed to complete. You can not break her concentration with it or she will have to start all over. (Example would be my ear lobes. Every night she has to rub my left ear lobe first several times, then she moves on to the right ear lobe. If you stop her, she gets flustered and will push whatever is blocking my ear lobe away or even grab my head and turn it around to where she can rub my ear lobes.)
  • She was potty trained at 4 yrs old. Not for my lack of trying!
  • She walks on her tip toes everywhere she goes.
  • Food is another big issue. Most of what she eats, she chews and then spits out. She will also not stop filling her mouth full of food until she can not hardly close her mouth. She will chew on it until she gags and then spits it out. I have learned that withholding food, yelling at her, giving her smaller portions, etc have no effect on her other to make her cry and very hungry. I instead gave her a mini fridge with 1/2 pint mason jars in it. The jars are filled with her favorite foods. Milk, fruit cups, Greek yogurt, cheese sticks, etc. She can grab food at her discretion and there is no longer wasted foods, hungry bellies, or fights.
  • She is extremely intelligent as well. She can figure things out easily and amaze you constantly. Example would be my cell phone. She can not only navigate it, she can also find You Tube and type in what she wants to watch, find games etc. Without being shown where they are on my phone.
  • Her diet is very controlled here. Her older sister was diagnosed with ADD/ADHD and Reine was diagnosed with it as well by our PCP. We chose to NOT put them on meds using diet to control it instead. We eat Real Whole foods with Feingold incorporated into it. We do not eat out. Nothing with preservatives in it, nitrates, nitrites, corn syrup, high fructose corn syrup, sodium benzoates, nothing with artificial colors, etc. I make almost everything from scratch food wise and also household wise. I make our laundry detergent, bath products, cleaning supplies, etc. We use essential oils instead of OTC meds and homeopathic remedies. (Example would be when we are sick. We take detox baths, chicken noodle soup, letting fever run it’s course, pushing fluids to name a few).

    This list became my best friend. I was able to reference it to fill out forms that I needed to send in to see if she met the initial criteria for ASD and SPD. I chose to go to The Kennedy Kreiger Institute located in Baltimore, Maryland. After filling out SEVERAL questionnaires, we were placed on a 4-8 month waiting list to be seen and diagnosed for possible ASD and SPD.  She was officially diagnosed with ASD and SPD on October 29, 2014, just days before her 5th birthday.

    For me the diagnoses was validating. For others it was a shock. Many of those close to us said they new it immediately upon meeting Reine for the first time, they just did not want to say anything to me.

    Uhm…OK. Yea. If you say so.

    We are now waiting to see Occupational Therapists and other specialists so that we can see where on the spectrum Reine is, and how to help her learn to navigate our world as we learn to navigate hers. I am now in research mode. Scouring the internet for information. To get me started on this path, I was recommended 3 books to purchase and to read ASAP by Reine’s diagnosing doctor. I purchased the books the next day and am in the processes of reading The  Out Of Sync Child right now.

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    THIS DONE MAMMA’S WARNING TO THE FOOLISH….

    If you EVER tell me there is something WRONG with my child, I will unleash a side of my myself that you will swear can only come from someone who is demonically possessed. I will unleash an extra large can of whoop ass followed by Hell Hounds you thought were only in horror movies or stories. I assure you they are very real and I control a set that will descend upon you, cut you deeply and leave you speechless and in tears. I will make you regret the second you opened your mouth and decided to be so bold as to tell me your opinion of my child. There is NOTHING wrong with my child. She is amazing, loving, intelligent, beautiful, spirited, and absolutely PERFECT in her own ways. The issue is that WE do not know how to navigate ourselves into HER world. My job will be to help her with merging her world into ours so that she can do and accomplish everything she has ever wanted and / or wished for.

    Want more information on ASD? Check out these sites.
    kennedykrieger.org
    awaare.nationalautismassociation.org
    nationalautismassociation.org
    cdc.gov
    webmd.com
    autism-society.org