COGNITION -
Cognition requires knowledge & understanding of what one is experiencing in their environment. Shows ability to use working memory, make judgments, reason, problem solve & make decisions.
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#3B -  What to do While You Wait... COGNITION (THINKING SKILLS) with < My Thoughts > by Sara Luker.

Try working on these SKILLS with your child:
           Preceded by:
                    #1 What to do While You Wait... Red Flags & Parental Concerns CHECKLIST
                    #2 What to do While You Wait... Doctors & Diagnosis & Denial – WHAT TO DO NEXT…
                   
< 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. 

HOW TO FIND THE INTERVENTION OUTCOME YOU ARE LOOKING FOR…
 
Before looking for a program…  Prioritize your child’s
​‘needs’…   Prioritize your ‘wants’
 
In other words…
 
What is the most concerning or destructive thing that is going on right now in your child’s world?
 
Recent studies show the following things worry parents the most…
 
Lack of… 

• gross motor skills
• speech/language communication
• cognition
• social/personal awareness
• daily living skills

=====================================
#3B What to do While You Wait...  Work on these SKILLS... COGNITION...
     a series of suggestions with < My Thoughts > by Sara Luker.
 
COGNITION –

In the ordinary world, ‘cognition’ or the ability of the child to make sense of their world by asking and answering questions, appropriately. By participating in a back-and-forth conversation, appropriately and by learning through active listening and paying attention. Another way to show ‘cognition’ is by showing ability to use short-term and long-term memory; as well as being able to understand the world from someone else’s perspective.
  
Most studies show that with early identification and intervention, children with autism, both verbal and non-verbal, have made cognitive gains with help. These gains can be made by helping the child expand and explore experiences in their natural setting (at home and community).

< My Thoughts >   ...While you're waiting...
for the world of doctor’s appointments, consultations, and program possibilities to open up for you... you might try some of these suggestions... Smiles.

The CDC Milestone Tracker suggests some of the following activities to do with your child:

2 – months:

• Talk, read, sing to your baby
• Encourage your child to play peek-a-boo
• Hold a toy or rattle so baby can reach for it

4 – months: All of the above, plus…

• Place toys near your child so s/he can reach or kick them
• Provide opportunities for your child to safely explore his/her surroundings

6 – months: All of the above, plus…

• When your baby looks at something, point to it and talk about it.
• When s/he drops something, pick it up and give back. Teaches cause/effect

9 – months: All of the above, plus…

• Teach more cause/effect by rolling a ball back & forth saying “My turn” … “Your turn”
• Say what you think your baby’s feeling… “Are you hungry?” “Are you sleepy?”
• Try to stick to an established daily & nightly routine

1 – Year: All of the above, plus…

• Help your child follow simple directions “Pick up toy”
• Show your child how to point to what s/he wants, using pointer finger
• Build on what your child is trying to say… “Yes, that’s a big blue truck.”

18 – Months: All of the above, plus…

• Help your child know what ordinary things are… spoon, cup, toy…
• Help your child point to body parts
• Help your child follow simple commands

2 – Years: All of the above, plus…

• Help your child learn & complete rhymes
• Teach your child to build a tower with more than 2 blocks
• Help your child sort by colors & numbers

3 – Years: All of the above, plus…

• Give your child the opportunity to work toys with buttons, levers, & moving parts
• Give your child the opportunity to work 2 – 4 piece puzzles
• Give your child the opportunity to copy shapes with a pencil or crayon

4 – Years: All of the above, plus…

• Give your child the opportunity to say first & last name & phone number
• Give your child the opportunity to sing songs from memory
• Give your child the opportunity to tell stories

5 – Years: All of the above, plus…

• Give your child the opportunity to learn name, parent’s name, address & phone number
• Give your child the opportunity to have a ‘play’ date
• Give your child the opportunity to explore his or her interests

Retrieved from: CDC Milestone Tracker Checklist, pdf. on Learn the Signs. Act Early. (cdc.gov/MilestoneTracker).
==========
Note: Next in the What to do While You Wait is -  #3C Social/Personal Awareness & Daily Living Skills
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 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 readers sharing information and for your enjoyment. 

Regards,
Sara Luker
​

BLOG: #3 - What to do While You Wait... #3A GROSS MOTOR & SPEECH/LANGUAGE COMMUNICATION.
 
Work on these SKILLS with your child: with < My Thoughts > by Sara Luker

           Preceded by:
                    #1 What to do While You Wait... Red Flags  &   
                         Parental Concerns CHECKLIST
                    #2 What to do While You Wait... Doctors, Diagnosis, & Denial  
                         WHAT TO DO NEXT…
                         FOLLOWING DIAGNOSIS

< 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; such as a clinician, therapist, teacher, or other interested professional.

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. Most 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. This will become very important information.

HOW TO FIND THE INTERVENTION OUTCOME YOU ARE LOOKING FOR…
 
Before looking for a program…  Prioritize your child’s
​‘needs’…   Prioritize your ‘wants’
 
Many parents want their child to be able to eat dinner with the family, even if they don’t eat the same kinds of food. Many children have sensory issues which make mealtime difficult; or they may do best on gluten/casein free foods. Other parents want their child to enjoy and participate in family get-to-gathers, outings, holidays, and vacations; even if they don’t share the same interests. Many children have a very narrow interest focus or preferred ritualistic routines.
 
In other words…
 
What is the most frightening or destructive thing that is going on right now in your child’s world?
 
Recent studies show the following things worry parents the most…
 
Lack of… 

• gross motor skills
• speech/language communication
• cognition
• social/personal awareness
• daily living skills

Let's look at #3A Gross Motor Skills & Speech/Language Communication, first. Next, will be #3B Cognition. Then, will be #3C Social/Personal Awareness & Daily Living Skills.
#3A, GROSS MOTOR SKILLS –

Depending on the age of your child, probably the fact that your child may not be meeting their 'developmental milestones' may be due to poor motor skills, both 'gross' (using large muscles) and 'fine' (involving pincer or grasping skills).

Teaching activities which develop ‘gross motor skills’ is something you can do with your child while you are ‘waiting’ for the world of doctor’s appointments, consultations, and program possibilities to open up for you. In other words, researchers recommend two types of physical programs… aerobic and aquatic. Both can be ‘fun’ activities you can do with your child and/or find in your local area. Look for 'Challenger' or 'Adaptive' programs. You don’t have to have the child’s ‘diagnosis’ in order to participate. Plus, you may meet new friends there and make important connections.
​
According to Zhan & Chen (2018) providing children with ASD the opportunity to participate in physical activities improves their physical condition, their self-esteem, social skills and their behavior. Often the child does not know how to interact with others in order to have that physical experience, but can be taught.

These authors go on to say that eventually children with exercise ‘spontaneously’, recognizing the need for that activity. They also believe that it gives the parent/teacher the opportunity to ask for certain elementary communication such as… ‘Please’ & ‘Thank You’ and also to occasionally give ‘eye contact’ when communicating. They have seen an improvement in parent/child interaction and the child’s interest in ‘otherworldly’ activities.

< My Thoughts >         “Physical programs…”

When children on the spectrum have an outlet for their 'super' energy, it may also become an outlet for their many frustrations or other out of control emotions. Parents may be surprised to see that providing a way for their child to use gross motor skills comes first on the list, but after all it may be one of the easiest and most enjoyable things to explore 'while you're waiting'...

We have had Sonny in aquatic programs sponsored by the Parks & Recreation and he was even able to ‘somewhat’ participate in a “T” ball group that we had found. Both programs allowed us to participate with him, so they went surprisingly well. We even practiced “T” ball at home in the backyard, a ‘natural setting’ for him where he felt most comfortable. Look for 'Challenger' or 'Adaptive' programs. This is a great way to involve siblings, also. Even if the group event doesn’t work out, it’s something to do at home… while you’re ‘waiting’.  

For children who love to spin, there is the ‘swing’. You can find ‘Therapeutic Swings’ in all shapes and sizes, online. Another is the trampoline. Many parents and schools have a room where the child can go to jump on the trampoline until they “get their sillies out”, is what I told my students. Sonny has never been a trampoline fan, but he likes to watch others jump around, which gets his focus off himself. Smiles. He also likes to walk on a little pathway with interesting things to see along the way that we have created in our yard. ​
​
For the toddler or young child, just sitting on the floor rolling a ball back and forth can be a ‘breakthrough’ experience. Eventually, you may be able to introduce several balls, some with their favorite character brightly displayed. Or, a color they seem to favor. You may not get eye contact, but any participation is good.

Engagement in a directed physical activity is the key. And, know that many subtle things are occurring at the same time, such as responding to your voice, feeling your happy energy, and staying in the moment. Just saying.

#3A, continued, SPEECH & LANGUAGE COMMUNICATION –

Communication issues are huge. Crying out is a primal instinct. It’s how babies let you know something’s up. Children without a satisfactory form of communication will often cry out. It’s what works, right? But as the child gets older, crying out or throwing a tantrum no longer gets the desired results.

If your child cannot communicate with you or you with your child, then both of you may lose patience and undesirable behaviors will soon become the pattern.

And, if your child has been identified as having communication issues or deficits, then most likely a speech therapist will be suggested to help them with communication.
The following excerpt is retrieved from –
https://www.webmd.com/brain/autism/benefits-speech-therapy-autism

Benefits of Speech Therapy for Autism: What role does speech therapy play in the treatment of autism?

Speech-language pathologists are therapists who specialize in treating language problems and speech disorders. They are a key part of the autism treatment team. With early screening and detection of people at risk, speech therapists often lead the way in helping with the diagnosis of autism and in making referrals to other specialists.

Once autism is diagnosed, speech therapists assess the best ways to improve communication and enhance a person's quality of life. Throughout therapy, the speech-language pathologist also works closely with the family, school, and other professionals. If someone with autism is nonverbal or has major trouble with speech, the speech therapist may introduce alternatives to speech.

Speech therapy techniques might include:

• Electronic "talkers"
• Signing or typing
• Using picture boards with words, known as picture exchange communication systems that start out using pictures instead of words to help a child learn to communicate
• Using sounds to which a person is over- or under-sensitive to expand and compress speech sounds
• Improving articulation of speech by massaging or exercising lips or facial muscles
• Having individuals sing songs composed to match the rhythm, stress, and flow of sentences

​Some of these techniques are supported more by research than others. Be sure to discuss them thoroughly with the speech-language pathologist and your child's pediatrician.
End of retrieved excerpt.

​thDeveloping common communication goals is one of the first things to be recommended by therapists. Children with ‘limited expressive language’ have few ways of signaling that they ‘want’ or ‘need’ something. Parents have little clue as to what the intention of the child’s signaling is. Using people as ‘tools’ is a common theme in much of the literature on speech and language communication. 

In other words, many children will grab the nearest person’s hand or arm and drag them to the desired object to get what they want, when they want it.

This can beThis can be the first signs that something is different with a child. Because their first communication is a tantrum, just as  a baby’s first communication is crying to have needs met.

In the post titled #4B PROGRAMS, THERAPIES & INTERVENTIONS, we talked about the 8 THERAPY PROGRAMS you may find under BEHAVIOR & COMMUNICATION (Please note these programs are listed in alphabetical order and in no way preferential order ) –

1. Applied Behavior Analysis (ABA)
2. Developmental Individual Differences Relation-Based-Approach (aka DIR/Floortime)
3. Occupational Therapy (OT)
4. Picture Exchange Communication System (PECS).
5. Relationship Development Intervention (RDI)
6. Sensory Integration Therapy for Sensory Processing Disorder (SPD)
7. Speech Therapy (ST)
8. Treatment & Education of Autistic & related Communication-handicapped Children (TEAACH)

Added to the list are other programs which parents have found successful, but are still NOT considered mainstream interventions, as of this publishing. There is a whole world of augmentative communication methods and devices, from sign language to simple battery-operated button devices which request – DRINK, EAT, TOY, or play a tune which signifies the child wants. because they are signing a request to you.
 
All the way up to the high-tech Dynavox Might Mo which Ewan uses.  And, of course higher-tech yet,  facilitated communication using an ordinary computer or those with voice commands and augmentative keyboards.
 
Included on this list is the Rapid Prompting Method which Soma Mukhopadhyay created for her son Tito. A clever method of age-appropriate fast-paced questioning, prodding and engaging with the use of low-tech alphabet letter boards with which the child responds.

Improve communication and you will reduce frustration, tantrums and emotional outbursts. While you are waiting for diagnosis or doctors and professionals to help you, you can try a few things. Depending on the level of your child’s ability to communicate, you can start with ‘low tech’ approaches. These are elementary or what is called ‘baby signing’.
​
Most babies learn to wave ‘bye-bye’, throw a kiss, nod their head for ‘yes’ or ‘no’. Sonny will blink his eyes for ‘yes’ and ‘no’, but seldom nods. Why? Don’t know, but children with autism can’t seem to accomplish these gestures. 

They can learn the basics of ‘baby sign’ language, though. Signs like… eat, drink, more, finished, I want, potty, bath, stop, nap, toy, please, thank you, etc. You can still let them know what you want them to do, even if they don’t use the sign themselves, they understand it. For instance, wait, look, listen, broken, sit down, stand up, come here, mom, dad, sister, brother; even phrases like “What do you want?” “Time to take your meds”, or “I love you.”

< My Thoughts >     "...they understand..."

By chance, I found an interactive toy that I thought Sonny might like. It was small, battery operated, with brightly colored buttons. I didn't know what all the functions were when I bought it, but come to find out one button when pushed said, “I love you!”

​To my amazement and delight… every once in a while, Sonny found the right combination to emit those words. The words that every parent longs to hear. Smiles.

BLOG #2 Doctors, Diagnosis & Denial  "What to do While You Wait?" with < My Thoughts > by Sara Luker

Preceded by:
BLOG #1 Red Flags & Parental Concerns Checklist
​
< My Thoughts >   Under more of 'What to do while you're waiting for the Day of Diagnosis'...  

Just so you know what others have faced, and that you are not alone… here are a few focused excerpts from my Extended Reviews with < My Thoughts > by Sara Luker.

​​Please go to my Webpage Menu (3 little horizontal lines in upper left-hand corner of the webpage screen) for all each complete Extended Review with References, by book title; where you will also find Links to Amazon to view all books, if you wish.

A ‘Reposting’ of portions from… 
Doctors, Diagnosis,& Denial 
                          
< 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 perceived  needs, observable behavior, delayed development, or other concerns.

Video recording (using phone app) what you are seeing and how your child is acting throughout the day/night. 'Seeing is believing' for someone new to your child. Prioritize, try new things that are non-invasive and see what works and what doesn't. This will also help you find out what your child responds to. Some learn best by hearing, seeing, or doing.

Eventually, you will have to choose from available programs, therapies, and services that will be offered to help your child. Some are quite expensive and require a heavy commitment to begin with, so try to understand your child well enough to help others figure out what will probably work and what won't. You can only know this by trying a few things on your own, first. In this 'page' I’ll give you some ideas on where to start to discover who your child is 'behind' the autism. 

More of... < My Thoughts > by Sara Luker  

​So perhaps you won't feel alone, I would like to offer several Focused  Excerpts of real-life experiences which some families have gone through. These are excerpts from the Extended Book Reviews on the website. The whole Extended Review and LINKS to Amazon.com are also available for you. Enjoy!
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A Spot on the Wall, by Martha Squaresky, eBook 2014 Edition; with < My Thoughts > by Sara Luker 
 
Excerpts from the book – (5% indicates location in the Kindle version of the book, instead of page numbers).

5%   Greg became obsessed with Sesame Street. When he was one-year old, he did thirty-piece puzzles. The new baby next door couldn’t do anything except eat, cry and play with a rattle, but not Greg. Clearly, he was brilliant.
 
5%   He had some quirky behaviors that we explained away easily. His repetitive play confused us as much as it entertained us. After all, how many children stayed at a task for hours? 
 
I faithfully recorded each new word in his baby book and according to our pediatrician, the same doctor that Jay had as a child, Greg was developing normally. I don’t know how Dr. Karp ever came to that conclusion since Greg screamed through every appointment.
 
< My Thoughts >      “…screamed through every appointment.”
 
Major, et al. (2013), brought light to the fact that “…there has been little focus on improving ASD education during pediatric residency.” This study was to evaluate the curriculum that was out there regarding autism. They found a promising one teaching future doctors these 7 case-based modules –
1.      Early warning signs of Autism
2.      Screening for Autism
3.      Communicating concerns: Screen & diagnosis results
4.      Making an Autism diagnosis
5.      Early intervention & education
6.      Treatments for Autism
7.      Autism-specific anticipatory guidance
 
In the conclusion, the authors stated that most pediatric residents felt training was important to their careers, but that “the current program was inadequate” and furthermore, “rated their competence regarding ASD as poor.” 
 
Gonzalez, et al. (2015) offered a study which was designed to show how children with disabilities improved over time with early intervention. Instead, they discovered the there was a huge disparity between white children being treated and the treatment of ‘ethnic others’. 
 
Among the reasons they gave was the family’s lack of access to traditional medical services or health care providers. Another was that pediatricians were not always (hardly ever) trained to become familiar with early identification and referral practices available in their community. Also, that  there seemed to be a lack of health insurance recommended/accepted healthcare providers,  in spite of the Individuals with Disabilities Education Act (IDEA) Part C stating the families are to receive services regardless of their ability to pay.
 
Some pediatricians, it was reported, took the “wait & see” approach to developmental delays they recognized in the patients that they did see. And, one of the reasons was that they didn’t know where to refer them next. Also, in the rare cases where they found doctors who did identify and refer children they suspected of delays, the parents did not want to follow-up, for whatever reasons. Often times, it was because the healthcare providers available to them didn’t look like them. In other words, there was very little cultural or ethnic diversity out there, to chose from for families with that additional concern.
 
6%   Greg looked so normal when he was little. 
 
People started to stare the older he got. It wasn’t so cute anymore to see Greg have a conniption in a store.

​REFERENCES used here:

Gonzalez, E., Summers, C., et al. (2015). Developmental Surveillance & Referral in a Traditionally Medically Underserved Border Community; Maternal Child Health; V19, p2323-2328.

Major, N., Peacock, G., Ruben, W., et al. (2013). Autism Training in Pediatric Residency: Evaluation of a Case-Based Curriculum; Journal of Autism & Developmental Disorders; V43, p1171-1177.

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​
A Child’s Journey Out of Autism: 
One Family’s Story of Living in Hope and Finding a Cure by Leeann Whiffen; eBook 2009 Edition with < My Thoughts, by Sara Luker >
 
Excerpts from the book – (11% indicates location in the Kindle version of the book, instead of page numbers).

11%   As we get to the park, I unbuckle Clay from the stroller, holding onto one of his arms. He manages to jerk free and runs full speed toward the road. He darts in front of a car, narrowly beating the front bumper. I sprint after him. 
 
< My Thoughts >      “I sprint after him.”
 
Thompson (2012), comments that among the most challenging behaviors of children with autism is that of dashing out in all directions in order to escape, avoid, or just for the adrenaline rush of running. This is where I would be yelling in my best ‘Thomas’ voice…“Stop, the signal is up!”

​16%     Finally home, I hurry to the den and turn on the computer. I place my fingers on the keyboard and type “AUTISM”. My pinky finger hangs over the Enter key. My fear has a definition. I am afraid of what I might find. 
 
17%     That evening, I go to bed unable to sleep, I go back downstairs. I force myself to look at the “Signs & Symptoms” checklist.

• Inappropriate laughing and giggling.   CHECK!
• No real fear of danger .   CHECK!
• Apparent insensitivity to pain.     CHECK!
• May not want cuddling or act cuddly.    CHECK!
• Little or no eye contact.     CHECK!
• Difficulty expressing needs.     CHECK!
• Not responsive to verbal cues.     CHECK!
• Sustains odd play.     CHECK!  CHECK!  CHECK!
• Inappropriate attachment to objects.     CHECK!
• Insistence on sameness; resists change in routine.     CHECK!

 
My eyes filled with tears as I looked at this description of my son on the computer.
​
24%     Dr. Coates tells us, “You are fortunate to have caught this at such a young age.”
 
25%     “I feel venerable. Now it’s real. There’s no more hiding behind ignorance or denial…”
 
A part of me withered away today as the formality of the diagnosis crushed my dreams for Clay and what he could become – the barometer from which all parents measure their own successes and failures. How did this happen? I search myself…
 
28%     “I want to know what is at the root of Clay’s autism.” Once home, I head for the computer and immerse myself in research once again. I’ve heard about a Dr. Jepson… maybe he can help Clay.
 
35%     We play with Clay in the waiting room until the nurse calls us back. Dr. Jepson stands to shake our hands and says hi to Clay as he pats him on the back.  I’m taken back by how young he looks. He begins by walking us through the biomedical approach to autism using a PowerPoint presentation on his laptop.
 
36%     Dr. Jepson’s Power Point Presentation –
 
Autism is a complex metabolic disorder that involves multiple body systems:

• Neurological
• Toxicological
• Immunological

 
It begins with genetic susceptibility coupled with an environmental insult of one kind or another.
 
37%     A combination of insults on a fragile immune system. “Because of their diminished immune system function many children more prone to ear infections, eczema, and sinusitis. Most of the time antibiotics again are prescribed to treat these illnesses, further exacerbating the problem.”
 
I look at Dr. Jepson in disbelief. “Are you telling me Clay’s autism could have been a result of any or a combination of his vaccines, multiple rounds of antibiotics, extreme constipation alternating with diarrhea, ear infections, red cheeks, ears, and nose?”
 
He recommends some lab tests, including a hair analysis, urine organics acids test, Complete Blood Count (CBC), RBC minerals (measures nutrient mineral levels vs. toxic mineral levels), liver panel, and a thyroid function test. He also recommends placing Clay on a strict gluten- (wheat) and casein (milk) free diet. In addition, there are supplements he recommends for Clay.

< My Thoughts >     "...and a thyroid function test."
​
It seems that I always have to remind Sonny's doctors to do a thyroid function test. Don't hesitate to bring this up with your clinician, because a well functioning thyroid is critical to everyone's health, as it affects so many other functions. Insurance companies may not always want to pay for this test more than once, but sometimes it needs to be monitored as the child or adolescent develops. Just saying.
 
37%     “Sean,” I say on the way home, “one of my biggest concerns is that there haven’t been any ‘gold standard’ studies proving the triggers he mentioned are the culprits.”

REFERENCES used here:

​Thompson, T. (2012).  Making Sense of Autism; Brookes Publishing; Baltimore, Maryland; Ch. 7.
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Miracles Are Made: The Real-Life Guide to Autism by Lynette Louise & Tom Hale, eBook 2011; with < My Thoughts > by Sara Luker

Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).

4%       Diagnosis without directions: this is what it is to be told your child has autism.  It is my intention to help you understand why that is and then to change that reality by teaching you what to do to improve the prognosis. I will introduce you to the boy who introduced me to autism… it was attempting to understand Dar that taught me to understand autism.
 
5%       You can make a curative difference and yes it’s hard but it’s also fun.  It does however take loads of time and effort.  And that’s why I’ve called this book ‘Miracles Are Made’ because in fact they are.
 
8%       I did it myself, with the help of others who were willing to see me as the expert in my child’s development, and so can you.
 
9%       Dar was labeled PDD (Pervasive Developmental Disorder).At four years of age, Dar’s IQ was placed a nine-month-old level leaving him in the extremely retarded range. I began to read about autism at the same time that I applied to adopt him.
 
12%     I believed understanding Dar was the key to figuring out how to teach him. That’s when I decided to figure this disorder out, change the course of my own children’s lives, and share the magic with whoever else wished to know what I had learned.
 
14%     Brain disorders always present as clusters of symptoms rather than just one singular problem. For example, a child with autism may have sleep issues, depression, or sensory-seeking behavior that is only satisfied by great big deep pressure hugs, and tics, while another with the same disorder may have outbursts, periods of despondency, contact avoidance, seizures, and self-abusive behavior.
 
Thus it is true to say that ‘autism’ is a group of symptoms rather than a particular thing. And that these symptoms, these clusters, are connected and reinforced by each other so as you heal one you affect the others: While you heal the autism you smooth out all the behaviors created by the sub-disorders contained within it.
 
< My Thoughts >  “…connected and reinforced by each other so as you heal…”
 
“The goal of neurofeedback is for the patients to come to recognize the onset of electrical negativity and then to push in a positive direction. Attention Deficit Hyperactivity Disorder (ADHD) subjects train their brains to produce fewer theta waves and thereby more beta waves.” They also learn how to sustain pleasant feelings longer, Ulrich, K. (2006).

REFERENCES used here:

Ulrich, K. (2006). Train Your Brain; Scientific American, Feb/Mar 2006; Vol 17:1, p. 58-63.
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​

101 Tips for the Parents of Boys with Autism & 1,001 Tips for the Parents of Autistic Boys, by Ken Siri, eBooks 2015 & 2010; with < My Thoughts > by Sara Luker

Excerpts from the book – (4% indicates location in the Kindle version of the book, instead of page numbers).

4%/1,001         Do not allow yourself to journey down the road marked CURE.  Instead, travel down the road toward RECOVERY.”
 
Parents of autistic children need to adopt the mentalities of both a researcher and a warrior.  As both general and soldier in this fight, you must take ownership of all aspects of treatment, education, therapy, and organization as if preparing for battle.
 
As a warrior … you will experience the stress that accompanies battle.  Battling autism can leave one feeling devastated and alone.  You will need help and support along the way.
 
5%/1,001         Pay attention to any symptoms at any age.  Any loss of any language or social skills at any age.  If you have any inkling that your child’s development is off, it should be handled at the youngest possible age, as we now know that early intervention leads to better outcomes.  Children who are at risk (particularly those children of parents with auto immune conditions or those with siblings on the autism spectrum) should be watched very closely for any of the known symptoms.
 
If your pediatrician isn’t seeing what you see, don’t wait for him/her to come around.  If your child is under the age of three, contact your state’s early childhood intervention program and ask for an evaluation.   You can also visit a developmental pediatrician or clinical psychologist trained in diagnosing ASD.
 
It’s not your fault your child has autism…it never was…and it never will be.
 
Don’t ignore your inner parent voice.  If you think professionals are off-base, don’t dismiss your instinct because you’re “just” a parent, and he/she is a highly esteemed professional.  Get another opinion.
 
< My Thoughts >  “Don’t ignore your inner parent voice.”
 
Don’t ignore your inner parent voice… because you’re “just” a parent, and he/she is a highly esteemed professional. 
 
I can’t stress this enough!  If ‘they’ (the esteemed ‘they’…doctor, teacher, therapist, or other) are telling you everything is fine…hinting that the problem is with you…the overanxious parent…then head for the door. 

​Or, in another situation…if you’re not happy with what educators are presenting to you as their “must do” solutions, ask for additional verification.  Everyone has their own idea of what comes first – the chicken or the egg.  Yeah!

​According to Murray, et al. (2007), “Parents’ viewpoints on what works and does not work when collaborating with professionals in terms of family choices, their suggestions for strategies are notably absent from the literature.” But families need to make choices over the lifespan of their child.
 
Family choice about the ‘pros and cons’ of interventions, service options, or what is really needed, should be shared with the professionals who can help to make any of those decisions.  “Unfortunately, professionals are not often trained to defer their own personal values,” when assisting the family.

7%/1,001     Autism is a spectrum, and all the children with autism are different.  What works for one child may not work for another.  For this reason, some of these tips may appear to be contradictory.  

19%/1,001       Also remember once your child has an official diagnosis they are entitled to Medicaid, which has some pros and cons and is covered throughout the book. Your child can qualify for Supplemental Security Income (SSI), but this and the Medicaid benefits will only go so far. If either parent is a veteran, there may be VA benefits or services available. Check online for biomedical treatment options covered by TRICARE (Military entity). Also check on Supplements, Respite Care and other programs like STOMP and Autism Salutes (also military).

< My Thoughts >  Your pediatrician can recommend a specialist…
 
In the ‘know the protocol’ department…determine what your insurance company requires to change pediatricians, get referrals, and/or pay professionals on ‘their list’. We found out the hard way when we were told… "if you had been referred to someone on our ‘list’ we could have paid for it. Now, after-the-fact, you will have to pay that $1,000 plus out-of-pocket." Ugh! Even/especially Medicaid has a payment protocol. They may need several months notice about providing services or payments.

REFERENCES used here:

​Murray, M., Christensen, K., Umbarger, G. et al. (2007). Supporting Family Choice; Early Education Journal; V35:2, p111-117.

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