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.
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,
- Bowel disease
- Gastrointestinal/digestive disorders
- Persistent viral infections
- Feeding disorders
- Anxiety disorder
- Bipolar disorder
- Tourette Syndrome
- Sensory processing disorder
- Sleeping disorders
- Immune disorders
- Autoimmune disorders
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:
- Household chemicals
- Medications (non antibiotic medications)
- Industrial cleaning chemicals
- Nutrition of Mom to be
- Nutrition of child
- 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.
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.
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.
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.
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.