BLOG #1 RED FLAGS & CHECKLIST

​1 Red Flags & Checklist: How will I know?
"What to do While You Wait" with < My Thoughts > by Sara Luker    
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What you can do while you are waiting for the world of doctor’s appointments, consultations, and program possibilities to open up to you…  
 
#1 What to do While You Wait… Red Flags & Checklist
#2 What to do While You Wait… Safety & Support
#3 What to do While You Wait… Prioritize Wants & Needs
#4 What to do While You Wait… Look into Programs
 
< My Thoughts >  "While You Wait..."
 
Parents often must wait days, weeks, and even months for assessments or doctor appointments. During this stressful time, it's good to feel that you are actively helping your child. This can become an important time of clarifying what bothers you the most about your child's behavior, development, or other concerns. Video tape what you are seeing and how your child acts throughout the day/night. 'Seeing is believing' for someone new to your child. 
 
Prioritize your child's 'needs' and your 'wants'. Try new things... like teaching your child age appropriate 'developmental skills' that are non-invasive. See what works and what doesn't. Eventually, you will have to choose from available programs, therapies, and services that will be offered. Some are quite expensive, so understand your child well enough to figure out what will probably work and what absolutely won't. You can only know this by trying some things on your own. In this 'page' I give you some ideas on where to start to discover who your child is 'behind' the autism. 
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# 1 WHAT TO DO WHILE YOU WAIT… RED FLAGS & CHECKLIST with < My Thoughts > by Sara Luker

HOW DO I KNOW IF IT'S AUTISM? A parent asked me where to find a list of 'red flags' & a ‘checklist’? Well, here they are –

< My Thoughts >     Not one or two of these behaviors indicate Autism. But, if things just don't seem right and several of these behaviors continue to be a concern... then it's wise to get a professional opinion. Early intervention is the 'key' to helping your child.

​< My Thoughts >      Parents often say that the hardest thing to bear is that so many behaviors seem to have no meaning or function.​ Once they understand the cause of the behaviors they are less difficult to accept. In other words, the child may be reacting to his or her surroundings, or have other 'sensory' issues.

< My Thoughts >     Ever wonder why your child does the things s/he does? How many times have you said in frustration – “Why in the world did you just do that?” Seems that some of us have five thumbs, while others have green thumbs. It all may be about our sensory perception of the world. Some of us are destined to take a chance, those are the risk-takers.

​While others of us spend life on the sidelines, observing from afar. Take this one step farther and think about what it must be like to have Sensory Processing Disorder. Either your world is filled with exciting opportunities… or, your world if filled with one terrifying event after another. Just saying…
 
The following information is retrieved from: https://www.sensory-processing-disorder.com/
Ever Wonder Why Your Child Does The Things S/he Does? 

• Do you wonder why they are excessive risk takers - jumping and crashing into anything they can ?
• Why they can’t do puzzles - write well - or find the coordination for riding a bike or hitting a ball?
• Why they cry or cover their ears with every loud sound - even vacuums, toilets or hairdryers ?
• Why they don’t like to be touched or can’t be touched enough?
• Why they will only eat macaroni/cheese and pizza?
• Why they will only wear certain clothes or need you to cut the tags out of their shirts?
• Ever wonder why you can’t seem to calm them down or get them to sleep?
• Why they won’t put their hands in anything messy or use glue or Play Doh, but will play with mud?
• Why they fear playground equipment or fear being tipped upside down?
• Why crowded stores bother them so much leading to major meltdowns in public places?

Explore their site for more of these “behaviors” and to find the reasons why this apparent “chaos” actually makes perfect sense. Smiles.

​Resources for Images retrieved online -
Early Childhood Development Red Flags from -www.pininterest.com/TheBigAWord/signs-of-Autism
What are the Symptoms? from - www.dealwithautism.com
Clinical Presentation of Autistic Patients (Table 1) from - www.uspharma.com
Asperger syndrome from - www.slideshare.net
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Parent Concerns Informal Checklist (Modified by Sara Luker), from Developmental Milestone checklist from CDC.

See the original version on the CDC (Centers for Disease Control & Prevention) website under – Learn the Signs. Act Early; on www.cdc.gov/ActEarly  They give you the developmental milestones that your baby should be meeting and also tell you things that you can do to 'help your baby's development'. This will also highlight concerns that you can discuss with your baby's doctor.
 
Child’s Name _______________ Date of Birth _________ Parent’s Name ____________________
 
My Child:
 
Responds to name
 
           Yes      Sometimes      No
 
Says 10 (or more) words
 
          Yes      Sometimes      No
 
Learns new words, weekly
 
           Yes      Sometimes      No

Repeats new words heard
 
           Yes      Sometimes      No

**Repeats a new or familiar word over & over, constantly
 
           Yes      Sometimes      No
 
Says 50 (or more) words
 
           Yes      Sometimes      No
 
Puts 2 words together, independently
 
            Yes      Sometimes      No

Gets my attention with words
 
            Yes      Sometimes      No
 
Rejects something by saying “No”
  
            Yes      Sometimes      No

Asks questions by changing voice to indicate s/he is asking a question
 
            Yes      Sometimes      No
 
Takes turns in a conversation (engages in a back-and-forth)
 
           Yes      Sometimes      No
 
Asks for help with words
 
            Yes      Sometimes      No

Says understandable 3-4 word sentences
  
            Yes      Sometimes      No

Is easily understood by other family members
 
           Yes      Sometimes      No
 
Is easily understood by familiar adults
 
           Yes      Sometimes      No
 
Is easily understood by unfamiliar adults
 
           Yes      Sometimes      No
 
Follows one-step directions
 
           Yes      Sometimes      No
 
Follows two-step directions
 
           Yes      Sometimes      No
 
Listens to story being read in short picture book
 
           Yes      Sometimes      No
 
Names the pictures in the book (interaction with reader)
 
            Yes      Sometimes      No
 
Answers “Yes” or “No” questions
 
            Yes      Sometimes      No
 
Answers “wh” questions (who, when, where, what, why, how)
  
           Yes      Sometimes      No

Uses pronouns correctly (I, me, we… instead of using person’s name)
 
              Yes      Sometimes      No

Knows some songs or nursery rhymes
 
              Yes      Sometimes      No
 
Participates in pretend play (plays mommy/daddy, teacher, doctor)
 
              Yes      Sometimes      No
 
**Very active, always in motion (hyperactive)
  
               Yes      Sometimes      No

**Acts without fear of consequences (impulsive)
 
                Yes      Sometimes      No 

Points to objects s/he sees or wants
 
                 Yes      Sometimes      No
 
**Unusual reaction to the way things sound, smell, feel, taste or look
 
                 Yes      Sometimes      No
 
**Throws tantrums (goal oriented, wants something that’s been denied, needs audience to be watching, trying to get control of others)
 
                 Yes      Sometimes      No
 
**Has meltdowns (doesn’t know what’s wrong, may be ‘sensory’ or other ‘overload’ or overwhelmed by what is happening, emotions out of control)
 
                 Yes      Sometimes      No
 
**Lines up toys or other objects, obsessively engages in self-stimulatory behavior
 
                  Yes      Sometimes      No
 
**Plays with the same toys the same way every time
 
                 Yes      Some-times      No
 
**Needs to follow a routine or ritual (bedtime, getting dressed)
 
                 Yes      Sometimes      No
 
**Flaps hands, rocks body, or spins self in circles (or watches spinning things for a long period of time) Add something?________________
 
                   Yes      Sometimes      No
 
**Only eats certain foods
  
                   Yes      Sometimes      No

**Has difficulty feeding oneself
 
                   Yes      Sometimes      No

Can use pincher fingers to pick-up food
 
                   Yes      Sometimes      No

Uses utensils to eat
  
                    Yes      Some-times      No

**Seems clumsy or uncoordinated
  
                     Yes      Sometimes      No

Can play on age-appropriate playground equipment
 
                    Yes      Sometimes      No
 
Plays well with siblings & same-age children
 
                     Yes      Sometimes      No

< My Thoughts >    If the starred (**) questions have a 'Yes' answer & there are a large number of 'No' answers... that may indicate autism-like tendencies. This is only an "INFORMAL" Checklist, to be used ONLY as a guide to inform parental concerns. 
  
Milestone checklist from CDC (Modified by Sara Luker)  Actual list can be retrieved on – CDC Learn the Signs.Act Early. https://www.cdc.gov/ncbddd/actearly/milestones/index.html
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​< My Thoughts >       What I am offering here is a powerful story which may capture in a moment, what it is like to have this experience. (Checking a checklist.)

He’s Not Autistic, But…How We Pulled Our Son from the Mouth of the Abyss  by Tenna Merchent, eBooks 2007 Edition; an Extended Review with < My Thoughts > by Sara Luker

Excerpts from the book – (7% indicates location in the Kindle version of the book, instead of page numbers).

< Excerpts from – “An Important Message to the Reader” from author, Tenna Merchent… >
 
7%       This book is an account of my own experiences in seeking treatment for my son’s physical ailments.
 
Traditional Western medicine has its value and place.  I am simply sharing our experiences, what worked for us and what has not.
 
I strongly recommend that you consult conventional medical doctors before you make the decision to use these approaches so you will understand the risks of doing so.
 
< End of excerpts from – An Important Message to the Reader from author Tenna Merchant >
 
Excerpts from Tenna’s book…
 
7%       What was it like to write this book? It was a calling, a mission, an assignment. 
 
I kept thinking when Clay was sick, “I need to be writing this down. But I was too tired and too stressed.
 
I knew Clay was very sick – it wasn’t just back-to-back colds – but the pediatrician didn’t believe me.
 
8%       Writing this book also made me grateful. Clay has been healthy for a long time now; I sometimes take it for granted. 
 
Committing this story to paper vividly reminded me of how bad things really were, how miserable we all were, and how desperate I was to find answers. I always want to be grateful for this miraculous gift.
 
If you are reading this, you or someone you love probably has aluminum, yeast, parasites, or reverse polarity.

10% - 12%      “He’s Not Autistic, But…”
                        

• For no reason, he bangs his head on window ledges, asphalt, the floor, and with his hands.
• He frequently walks on his toes, and sometimes spins in circles. 
• He’s extremely allergic to milk, corn, soy, eggs, oats, chocolate, feathers, and dust. 

 
Those are just the things we know he’s allergic to. Eating is like walking through a minefield.
 
Luckily he’s not allergic to wheat, although people keep trying to get us to take him off of it because so many autistic children are allergic to wheat.

• He’s two years old and can only say about eight things, mostly no, bu for ball (which he uses to describe almost everything), and du for dad. A two-year-old should have a 50-word vocabulary and be using two-word sentences. At nine months old he used to say mama or randomly string noises together to make words, but that skill is long gone. 
• He’s sick most of the time and a cold means at least two weeks of hell for the whole family. 
• His nose and chest are constantly congested and mucous shoots down to his chest when he sneezes.
• He doesn’t sleep for more than two or three hours at a time, waking frequently and crying.
• He’s unhappy most of the time, grunting and crying; smiling is rare. 
• He wants to be held all the time and refuses to walk even though he’s capable; Mommy’s back hurts most of the time as a result.
• He insists on climbing up on the bar in the den every night, and paces back and forth, endlessly. It doesn’t actually make him 'happy' he’s just less unhappy. He grunts as he does it. Every night feels like a test of endurance.
• He absolutely hates to ride in the car. A fifteen-minute drive puts Mommy in a full sweat, and an hour drive is almost out of the question.
• We have to cut his hair when he sleeps because he becomes so hysterical and thrashes so much at the barber we’re afraid he’ll get hurt.
• Noises frighten him so much we carry a headset intended for a gun range in our diaper bag.  …A lawn mower backfiring during one of our walks can start a complete meltdown that will ruin the rest of the day for him.
• The tags in his clothes bother him to the point we have to surgically remove them from every shirt to make sure no plastic thread or part of the tag is left to rub his skin. He won’t wear shirts with snaps... because something about the snaps bothers him.
• His shoelaces have to be tied backwards, because he wants them exactly perpendicular to his leg. He becomes explosive if I forget and hurriedly tie them my normal way.
• He has systemic yeast.
• He makes eye contact, although I frequently find him looking through me instead of at me.
• He likes to watch fans, although not as much as he did when he was a baby.
• He sometimes crawls on the floor on his hands and knees and bizarrely drags his head as he moves across the floor. 

 
“He’s not autistic, but…” I kept hearing myself say as I explained Clay’s behavior, illnesses, inability to sleep through the night, and sensory issues.
 
< My Thoughts >      “He’s not autistic, but…” I kept hearing myself say as I explained Clay’s behavior…
 
Ventola, et al. (2006) claim in their study that 195 children that have failed to be diagnosed with ‘autism’ have ‘something else’. Something that is consistent with impairments in socialization skills, joint attention skills and some aspects of communication, play, and sensory processing. They go on to say that these children have developmental delays, but are ‘less’ impaired than those who met the criteria for Autism Spectrum Disorder. These children seem more adaptable than the ASD children, although they share the same behavioral differences.

​REFERENCES used here are:

Ventola, P., Kleinman, J. Pandey, J., et al. (2006). Differentiating between Autism Spectrum Disorders and Other Developmental Disabilities in Children Who Failed a Screening Instrument for ASD; Journal of Developmental Disorders: V37:425-436.
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​​< My Thoughts >       What I am offering here is a powerful story which may capture in a moment, what it is like to have this experience. (Checking a checklist.)

Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, & the Meaning of Normal, by Kerry Cohen, eBook 2011; with <My Thoughts> by Sara Luker

Excerpts from the book – (1% indicates location in the Kindle version of the book, instead of page numbers).

1%       Ezra twirls & dances through the world, laughing, humming. I am afraid I don’t have the language to describe him the right way.
​
How he is just a child, like any other child, and also how he is different. How he is so much more, always, than you think he might be.

3%       He is fine. His autism, even, is fine. Ezra’s autism changed us, yes. This moment held inside it everything that has been harmful to us about his autism. The first time I hear the word ‘autism’ associated with Ezra, he is only a year old, and it comes from his young baby sitter. “I think Ezra’s on the autistic spectrum,” she states.

I want to claim that time back. I want to go back to that moment when she said Autism. I would never be the same. My son was stolen from me. How dare anyone take that process of discovery from me.

5%       He had normal eye contact. He plays normally with most toys, albeit sometimes in rigid ways. But what about his poor eating? No pointing & crying when songs end.

< My Thoughts >  Parents in denial tell her, “School just doesn’t get my kid.” The severity of the child’s ‘interactive difficulties’ appears to influence what the parents do next.
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BLOG #2 will be a 'Reposting' of what I call...The 3 'D's'... Diagnosis, Doctors, & Denial. 
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Disclaimer: Just to let you know that I, Sara Luker, have put forth my best efforts to create the extended book reviews presented here on this website. I have permission from the authors to publish these Extended Book Reviews. This is just a sharing of stories of those who have gone on before you. Please, understand also that all health matters ALWAYS require professional medical decisions, diagnosis, and treatment by highly qualified and licensed individuals.
 
Recently, I have added “What to Do While You Wait” to the website. This collection of information is for educational purposes only. My hope is that you will not feel alone when dealing with the wonders and mysteries of Autism Spectrum Disorder. Know that I, Sara Luker, receive neither financial rewards nor other interests derived from this website. This has been created purely for the author’s and reader’s sharing information. 

Regards,
Sara Luker
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