What To Do While You Wait ~ #4 LOOKING INTO PROGRAMS ~ INTRODUCTION:

< My Thoughts >  Parental concerns, the severity of a child’s behavior, the amount of support, the family has, or doesn’t have, all contribute to the family making the choice of  becoming isolated or seeking help. Help can come from Programs, Therapies, & other Interventions.

Even if your child hasn’t been diagnosed yet, s/he may be eligible for Early Intervention Services. The IDEA Law says that children under the age of 3 years old who are at-risk for having developmental delays may be eligible for services.

Some programs are expensive, so understand your child well enough to know what things may work and what may not. While you are waiting, try to discover who your child is behind the autism. There is danger in believing that ‘one-program-fits-all’ because each child is so different in their abilities and their challenges. That’s just a reality. 

When trying to get to know the child behind the autism, understand that s/he may be showing symptoms of more than one problem, challenge, or disorder. Misdiagnosis can result in your child receiving unnecessary or inappropriate services. Over diagnosis can also have negative consequences. Some tests provide overlapping information and that’s okay because clinicians will know how to sort everything out. Guard against becoming convinced that a program is going to ‘fix’ your child’s autism. 

Before looking for a program…  Prioritize your child’s
​‘needs’…   Prioritize your ‘wants’
 
       In other words…
 
       What is the most frightening
       or destructive thing going on
       right now in your child’s world?

Much of the diagnostic information will come from parents. So once again, be sure that you know your child well enough to give insightful but honest responses to all inquiries. If your child is in school, they will have critical input. Video taping (most smart phones have apps) can show what you may have difficulty expressing in words. You are looking for a way to ease the current situation. This may take time and diligence. 

Prioritize. Is your child repeatedly doing weird things? Is s/he refusing to eat to the point where it is life threatening? Is s/he biting you, screaming and kicking in walls? Tantrumming, having meltdowns and causing self-abuse? Is s/he a danger to his or herself or others? Then your child is asking for help the only way they are able to. 

​​There are many different types of treatment programs, interventions, and services being tried by parents and schools. Also, your child’s challenges may require having several non-competing therapies at once. Therefore, carefully consider the cost and time involved for your child and your family. Be very careful to fully understand your obligations. Remember that gym/spa membership you paid for every month for three years, even though you only went there a few times? You could find yourself in the same type of situation.
​
Here are some of them described by the Centers for Disease Control & Prevention – Retrieved from: https://www.cdc.gov/ncbddd/autism/treatment.html

• Early Intervention Services; these services are provided through your state & may provide testing or evaluation for your child. This may be your first step.
• Treatments; some different types of treatments are Behavior/Communication; Dietary; Medication; Complementary & Alternative Medicine.
• Behavior & Communication; Applied Behavior Analysis (ABA), Developmental Individual Differences Relation-Based-Approach (aka DIR/Floortime), Treatment & Education of Autistic & related Communication-handicapped Children (TEAACH), Occupational Therapy (OT), Sensory Integration Therapy for Sensory Processing Disorder (SPD), Speech Therapy, Picture Exchange Communication System (PECS).
• Dietary Approaches; many of these treatments are unproven. But, a medical doctor may recommend biomedical intervention after testing your child for food allergies, gastrointestinal problems, and/or nutritional deficiencies.
• Medication; there are no specific medications for ASD, only medications to treat related symptoms such as energy levels, inability to focus, depression, and/or seizures. Most often these are costly substance controlled drugs which need extremely careful monitoring for dosage and side effects.
• Complementary & Alternative Medicine (CAMs); these are treatments outside those typically recommended by the medical profession and without rigorous scientific research. Such as – auditory integration therapy, facilitated communication, gluten/casein-free diets, hyperbaric oxygen therapy, probiotics, acupuncture, vitamin supplements, chelation therapy, immunoglobulin infusions, animal therapy, massage therapy, creative therapy (art & music) etc.

END of #4 INTRODUCTION: What to do While You Wait with < My Thoughts > by Sara Luker
​

This POST is about #3C  "What to do While You Wait..."SOCIAL/PERSONAL AWARENESS & DAILY LIVING SKILLS…< My Thoughts > 
 
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 (phone App) 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 'post' I give you some ideas on where to begin 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 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

SOCIAL/PERSONAL AWARENESS –

< My Thoughts > Babies begin being ‘social’ by interacting with those around them. They smile, coo, and show excitement when they recognize someone. They should also learn to calm themselves down when anxious or upset. Children with autism may not respond this way. That’s where the parent can try to teach or encourage this social/emotional development.

By encouraging play, acting animated, happy; even singing and dancing around your child can be a place to start. Add new toys while letting him/her cling to the favorite toys. Encourage independence by helping the child dress and undress at appropriate times. Allow for favorite shirts, colors, or styles. S/he may not like tight or heavy clothing. Tags are a definite ‘no – no’ for most children with Sensory Issues.

What to do while you wait? A favorite of parents and teachers for learning self-awareness would by teaching social skills through ‘Social Stories’. Carol Gray was the official originator of ‘Social Stories’ and you can find much online to learn more about her methods. Versions of these teacher/parent–made stories have been used the world over, in some form or another. You don’t have to take a course or follow a certain protocol in order to create them. 
​

​Social Stories
 
Crozier & Tincani (2007) tell us that “a ‘social story’ is a short story written for an individual. The story describes a specific activity and the behavior expectations associated with that activity.” You can also create a story to introduce ‘novel’ events such as Holiday gatherings, birthday parties, or other events.
​
For instance if you are going to take your child to the park, or to the store, you could create a little story to show them what to do or expect to see there. Here is an example of what the authors used as ‘Social Story’ text for a preschool boy who was mostly reclusive, but became animated during Preschool snacktime.

            My name is Daniel
            We have snacktime at school
            Friends talk & share snacks
            Some friends say “Hi”
            Some friends ask for a drink
            Some friends ask for more snacks
            I can say “Hi” to my friends
            I can ask for a drink
            I can ask for more snacks
            Friends are happy when we talk at snacktime!

The authors commented that many children need to have pictures added to the story, these can be real-time or Clip Art. Also many need to have verbal prompts added for emphasis and to increase success.

​< My Thoughts > Use your creative license here. Children with autism or autism-like behavior take in a lot more than parents are aware. They often use peripheral vision to watch your every move, but you’ll never catch them looking at you. So, create this social stories within his or her view. Best of all scenarios would be to have them choose a picture or help you in some way, however small. Of course, the latest twist on Carol Gray’s Social Stories is the APP available so that you can create, present, and store your child’s stories on your iPad or iPhone. Smiles.

Reference used here was:
Crozier, S & Tincani, M. (2006). Effects of Social Stories on Prosocial Behavior of Preschool Children with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V37, p1803 - 1814.

​DAILY LIVING SKILLS –
< My Thoughts > Developing ‘daily living skills’ and developing ‘self-awareness’ go together hand-in-hand. This becomes one of the trickier tasks to teach with any child. So, before teaching/learning ‘daily living skills’ one must determine if the child has ‘self-awareness’

​If your child responds to posters or books, you might try creating a Visual Daily Schedule to teach ‘Daily living skills’. Here are some ideas, many more online. Of course, social stories and verbal prompting or other visual and auditory cueing is usually necessary. I’m never implying that your child will spontaneously or independently use these visuals to dress or bathe, but that is the ultimate goal. Smiles.

Reference used here was:
Duff, C. & Flattery Jr., J. (2014). Developing Mirror Self Awareness in Students with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V44, p.1027 - 1038.

=================
Note: Next in the What to do While You Wait is - #4 Programs, Therapies & Interventions. Enjoy!
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

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.
====================================
#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!
=============

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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​

​1 Red Flags & Checklist: How will I know?
"What to do While You Wait" with < My Thoughts > by Sara Luker    
​
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. 
=====================
# 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 >       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.
​
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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BLOG #5K – a. & b. – SENSORY INTEGRATION  (a. SENSORY ROOM, b. SENSORY ACTIVITIES)
​
a. SENSORY ROOM –

A sensory room is a designated space in your home (or school, or community, or public place) specifically designed with tools and equipment to help a child regulate their senses, especially when they are experiencing sensory overload or a meltdown.

Many kids on the autism spectrum have sensory issues. This could mean some senses are heightened — a small amount of sensory input feels overwhelming, which may make a child  become sensory-avoidant in certain areas. Other senses may be lowered — a large amount of sensory input is needed, so a child may be sensory-seeking.

1. Swing – to provide vestibular stimulation, sense of movement or gravity. There are different types, such as a deep pressure cocoon that hangs; a platform swing that sits on the floor, net swings much like a hammock.

2. Bean Bag Chair or Crash Pad – A large object, something which provides a safe and soft landing for those who need to jump or throw themselves around. Or, for those who just want to cuddle up somewhere and read or listen to music.

3. ‘Weighted’ Blanket, Lap Pad, Vest, or Toy – Heavily weighted things which provide therapeutic relief derived from deep pressure. Used to regulate sleep, calm anxiety and/or stressful moments.

4. Therapy Ball or Trampoline – of various sizes and shapes to satisfy bouncing and big-movement sensory seekers.

5. Soothing Light – calming or exciting lighting for those who need one or the other. From a string of Christmas lights to projection or wave lamps can be helpful. < My Thoughts > Strobe or strobe-like activity lights tend to start seizures for Sonny. Some lamps tend to get hot or have an electrical smell to them. Just saying you may want to avoid these.

6. Bubble Tube – bubblers or tubes with visuals like fake jellyfish or angelfish… or lava lamp-like tubes which are soothing or exciting, depending on visual needs. < My Thoughts > Again, some tend to get hot, have an electrical smell to them, or safety issues. Just saying you may want to avoid these... do your homework before you buy... and, look for UL approval mark.

7. Fidget Toys – to keep fingers and minds busy, varieties of these available out there. < My Thoughts > Personally, I DON’T allow these out of the sensory room for a long list of ‘distraction’ reasons. I DO allow Rubik cubes, though. Just saying.

8.  Body Socks – Sensory socks provide some compression, allowing body movement at the same time. < My Thoughts > there are also ‘wraps’ that can be used for heavier compression, but the person is NOT to be left alone while in one. The idea of the body sock is the person is allowed creative movement, according to their sensory needs. Back in the day, we let kids put pillowcases on their feet and walk around, well supervised of course. Smiles.

9. Sensory Bins – containers filled with different textures; water beads, kinetic sand, dry rice and/or beans. Safety caution… find a container designed to put hands in, but not able to get objects out. < My Thoughts > Supervising this activity is a must! Creative kiddos love to stick beans in their mouths, ears, up their nose, and in other unmentionable places. Trust me on that!

10. Tent – a small table covered with a sheet or blanket will work. Or, there are indoor tents, anything to provide  a nest where one can hide out for awhile. < My Thoughts > may want to be able to control the lighting inside the tent… some like it dark and some need a light to be either soft or bright. I’ve heard that even Batman uses a nightlight. Smiles.

11. Noise-Blocking Headphones – there are noise- muffling and noise-cancelling headphones, depending on the sensory need. < My Thoughts > these can be ‘pricey’ depending on the function. If you can, try to consider exchanging headphones with those used for quality ‘Calming Music’. Just saying.

12. Calming Music – this is effective for dealing with anxiety, soothing unwanted feelings, and blocking out the world. Can also generate ‘white noise’ and stimulate those with sensory seeking needs or lethargy. < My Thoughts > Whale sounds, ocean waves, bird, cricket and nature sounds are affective to change moods. For days when Sonny needs inspiration we have Rafi songs like Baby Baluga. Or, bluesy and jazz tunes which get him humming. Smiles.

Retrieved from – 12 Items You Can Use to Create a Sensory Room for Kids on the Autism Spectrum by Ellen Stumbo, (Creator of  ‘Disability Matters’; March 13, 2019). https://themighty.com/2019/03/create-sensory-room-kids-autism/
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Adrienne Warber tells us to organize our home environment to assist our child’s progress. She emphasizes that one should arrange furniture in a way that allows a child to understand and cooperate more easily with tasks and directions. Like labeling common household items that you child sees and used daily. Use signs to give directions, establish boundaries in the house, making it easier to establish a comfortable routine and to learn.

Warber suggests a ‘sensory room’ where your child can have activities and objects that utilize the senses. A swing for vestibular input, aromatherapy for olfactory input, and various types of music for auditory input. She believes that environment influences behavior and that you can shape the environment to discourage destructive behaviors and encourage positive ones for the child with autism.

Here are some important components she mentions –

• Safety: the environment must always be childproof.
• Structure: children with autism often prefer strict routines.
• Peace: a calm environment can sooth anxiety issues.
• Stimulation: provide opportunities that stimulate the child’s senses within the environment.

Reminding us that children have several environments to acclimate to (home, school, community or public place), Warber asks that we make sure that each one will address the child’s needs and will nurture them.

< My Thoughts >       “…will address your child’s needs and will nurture them.”

Giving you child (or student) a choice is one way to address this. Sometimes when I think Sonny (or students) need to calm down… what is really needed is stimulation. As a parent or teacher, inform and educate yourself about your child’s sensory wants and needs. Consult an Occupational Therapist, or read their articles and blogs. Listen to their podcasts and look at YouTube videos. Make the room a ‘responding’ place where choices can be made. An ‘ever changing’ place where overcoming the sensory challenge being faced is the purpose. Remember that ‘one time’ something works… doesn’t mean that ‘every time’ it will work. Just saying. Smiles.
​
Retrieved from – Environment for Autistic Children, https://autism.lovetoknow.com/Environment_for_Autistic_Children
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Sensory Room on a Budget –

This mom tells us that six months ago, she created a sensory room at home for her daughter Raelyn. She did it on a budget and with things she already had around the house. She knew her autistic daughter would benefit from such a  room, but first she wanted to know what it was, exactly.

After researching, she found out that, “A sensory room is a special room designed to develop a person’s sense, unsually through special lighting, music, and objects.” Mom picked out a few essentials that she thought would work for them. Here they are –

• Things that spin, like pinwheels, fans, or fidget toys.
• A cozy corner, a perfect little place with a soft toy, blanket and pillow.
• A sensory swing. Spinning and swinging would be used to stimulate the brain and focus Raelyn.
• A yoga ball to sit on while doing puzzles or coloring
• A slide for climbing and of course, sliding.
• A sensory bin, sectioned and things like a knee-high nylon filled with beans/or/rice, objects of different textures, shapes, and colors.
• Calm-down bottles & soothing lights. Or, you can set-up a projection lamp to rotate shapes and colors on the walls and ceiling.
• Something to help with rocking and spinning. Can be a toy, a chair, or?

Raelyn likes magnets and spinning things, so mom rigged up magnetic objects that move around on a metal cookiesheet.

< My Thoughts >       “…mom rigged up…”
Just a reminder to consider ALL safety issues, when 'rigging up' things for your Sensory Room. Smiles.

Retrieved from – DIY Sensory Room on a Budget 2 BY INACTIVE BLOGGER ON JUNE 8, 2016 SPECIAL NEEDS; http://www.myatlantamomsclub.com/diy-sensory-room-budget/
 
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b. SENSORY ACTIVITIES
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The need for sensory activities is influenced by one’s sensory processing thresholds. And, how quickly one detects and self-regulates sensory input. Reynolds, et al. (2011) tell us that one’s sensory responsiveness can determine a person’s level of competence in their participatory roles.

In other words, children with autism may choose to limit engagement in types of activities because of their social and motor deficits. Even requested chores, they say, may be limited making the child seem opositional or defiant because of sensory issues. Even overall academic performance of students is associated with auditory filtering and under-responsivity/sensation seeking, according to these authors.

They report that children with ASD rarely engage in dramatic play activities, such as – playing army, playing school, playing house, playing Star Wars action figures, or other imaginative play requiring skills that could attract playmates. Also, saying that sensory over-responsive kids are often anxious and aggressive when forced into play with others, due to their sensory issues.

< My Thoughts >       “…requiring skills that could attract playmates.”

There are times when as a teacher, the curriculum calls for students to work in a group to solve a problem, or share information while learning. And, even when you ‘hand-pick’ group participants, it still makes it difficult for those students with sensory issues, not to become anxious or aggressive. Sometimes, with more structured teaching, you can assign tasks and props to give each person a task, depending on grade level.

My Elementary School, Middle School, and Special Education students liked what we called ‘Cooperative Group’ where each person had a role and a prop to use during a lesson. The props had the group members’ role printed on it. For instance… ‘Claire the Clarifier’ had a prop with a picture of a magnifier on one side and a script for what was to be asked ‘in group on the other side of the prop. Smiles.

OT Toolbox author tells us that proprioception is the body’s awareness system which allows us to walk around objects in our path, to move a spoon to our mouth without looking, brush our hair with just the right pressure, and to stand far enough away from others for comfort, and not to press too hard on a pencil when writing. Some gross motor proprioception therapy activities might be –

• At home… carry bags or laundry basket, rake leaves, vacuum or mop floors.
• At school… stack chairs or books, do chair and/or wall push-ups.
• Outside… jump rope or on a trampoline, climb trees, pull a wagon, bounce a ball, play twister or run.

​Try doing these things when kids seem fidgety, unsure, overwhelmed, clumsy, awkward, uncoordinated or unmotivated. The proprioception system is alerted through heavy work activities that involve heavy pressure, large and forceful motor movements and pushing or pulling activities. These activities can calm and organize those struggling with their body’s spatial awareness versus clumsiness. Retrieved from – OT Toolbox – How to Use Proprioception Activities to Help with Body Awareness,
https://www.theottoolbox.com/2017/09/proprioception-activities-improves-body-awareness.html
 
< My Thoughts >       “At school proprioception activities might include….”
 
Some students have sensory activities written into their Individualized Educational Plan (IEP). For instance, one boy, we’ll call him Sam, had a choice when doing a task, that if feeling anxious he could ask to have a 1 minute back rub, head rub, or tickle session, first.

​Some may say “Wait…what?” Instead of doing a task Sam can ask to be tickled? But this is an intervention which only takes a minute or so out of his learning time, and may keep him from having a severe sensory meltdown. Just saying that sometimes it pays to pick your battles. Smiles.
 
References used are:
 
Reynolds, S., Bendixen, R., Lawrence, T., & Lane, S. (2011). A Pilot Study Examining Activity Participation, Sensory Responsiveness, & Competence in Children with High Functioning Autism Spectrum Disorder; Journal of Autism & Developmental Disorders; V41, p1496-1506.
 
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​#5K – SENSORY INTEGRATION    (a. Sensory Room, b. Sensory Activities)
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Classic Sensory Integration Therapy (SIT), according to the meta-analysis reported on by Leong, et al. (2014), delivers intervention for an individual in a small group session. Various forms of sensory stimulation are used, such as the individual being rubbed with brushes or other textured items. Or, being swung or spun in a hammock, being rocked back and forth while lying on a gym ball; or being moved on a scooter board. There could be joint compression from wrist weights. Different practices, interpretations and theories have been explored since the A. Jean Ayres’ Sensory Integration strategies began to be known in 1972.
 
< My Thoughts >       “…Various forms of sensory stimulation are used.”
 
The sensory stimulations being used are determined from the various forms of sensory information derived from the person’s ‘sensory profile’. From there, the therapist develops a ‘sensory diet’ of sensory-based activities for home and for school. For instance, some integration activities might be developed to help the person with sensory seeking stimulation needs, sensory avoidance or aversion situations, and/or sensory balance requirements.
 
Thompson (2012) tells us that the Ayers’ method of satisfying sensory needs through sensory integration ranged from the calming input of massage and weighted vests, to listening to music to which massages the middle ear hair cells in the cochlea. These various sensory-based stimulation techniques are incorporated into programs or used in isolation.
 
< My Thoughts >       “…incorporated into programs or used in isolation.”
 
One of A.Jean Ayers' early publications was Improving Academic Scores Through Sensory Integration; Journal of Learning Disabilities (1972). This article described her idea that ‘identifiable types of sensory integrative dysfunction’ could be included in a remedial program. Thus improving a students’ learning and academic performance by changing unwanted sensory responses. The Ayers’ method  is well known among therapists and teachers alike.
 
Others, such as Winnie Dunn, with her ‘Sensory Profile’, added to the development of a child’s sensory processing abilities and/or disabilities. Dunn felt that these undesirable sensory responses, plus the individual’s temperament, may negatively impact their daily life as well as their academic learning.

The Dunn Sensory Profile is intended to create a comprehensive picture of the person’s sensory performance; thus combined with other data will help with diagnostic and intervention planning. You can have a look at one assessment portfolio on this website – Retrieved from – https://otforchildrenassessmentportfolio.blogspot.com/2013/04/sensory-profile.html
 
Sensory integration, according to a study made through the University of Belfast, Northern Ireland, and explained by Doumas, et al. (2015) saying that sensi-motor control processes affect the person with Autism Spectrum Disorder. We receive sensory information from three main channels, our eyes, our ears, and our touch. These authors state that control in a task does not rely equally on all three channels simultaneously, but rather on information from the channel relied upon most for information.

For instance, one uses their sight to see where they are going, until it becomes dark. Then the other two sensory channels of hearing and touch are relied upon, or needed the most for sensory information because there is no longer reliable visual information available in the dark.

< My Thoughts >       “We receive sensory information from three main channels.”
 
Sensory information impairments are now part of the Diagnostic & Statistical Manual of Mental Disorders, 5th Edition (DSM-5). This includes ‘hyper’ or ‘hypo’ reactivity to sensory input or unusual interest in sensory aspects of the environment. It is known that impaired sensory processing or deficits in sensory channels make it difficult for children with ASD to perform ordinary tasks. Considerably more difficult than for those typically developing (TD) children and adults.

Author Amelia Tiedemann tell us that the A. Jean Ayres' definition of ‘sensory integration’ as the neurological process that organizes sensations from one's body and from the environment. In order to thrive within the environment, one’s body must make the appropriate adaptive responses. To direct the body, the brain must register, select, interpret, compare, and associate sensory information in a flexible, constantly-changing pattern,” Ayres (1989).

​Pediatric Occupational Therapist, Cara Koscinski asks you to close your eyes and imagine yourself swinging on a warm sunny day. Feel the breeze blowing past you and the fluttering butterflies in your stomach as the swing reaches its highest point. The freedom of flying sensation is why swings continue to be used by therapists, and remain the staple in backyards and playgrounds all over the world. Retrieved online from: https://harkla.co/blogs/special-needs/sensory-swings-autism

Yet another explanation of Sensory Integration refers to how people use the information provided by all the sensations coming from within and from outside the body and from the external environment. We usually think of the senses as separate channels of information, but they actually work together to give us a reliable picture of the world and our place in it. Your senses integrate to form a complete understanding of who you are, where you are, and what is happening around you. Because your brain uses information about sights, sounds, textures, smells, tastes, and movement in an organized way, you assign meaning to your sensory experiences. Retrieved from: https://www.familyeducation.com/school/sensory-integration-dysfunction/what-sensory-integration
 
< My Thoughts >             “…assign meaning to your sensory experiences…”
 
Thompson (2012) states that there is no consistent evidence that sensory-based treatments have specific lasting effects on the behavior of children or adults with ASD. But, he says the lack of evidence does not necessarily prove that a treatment is ineffective…
 
While Leong, et al (2014) thinks that the problem of authenticating the value of Sensory Integration Therapy may lie with the integrity of the trials, or with ‘pre’ and ‘post’ test validity. They point out that the difference could also be with the state of brain ‘plasticity’ of the child/adult receiving the therapy.
 
Just as there are hundreds of thousands of educators trying to make a difference in the world, there are just as many therapists trying to do the same. Some students are lifelong learners, while some just want to attain a certain level to get by. Those on the Autism Spectrum may feel the same way, according to their personality, temperament, and abilities. I applaud the teachers and therapists who continue to find ways to give those in their path the opportunity to move toward greater independence. Just saying.
 
< My Thoughts >             “…the opportunity to move toward greater independence.”
 
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…
 
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BLOG #5F – SENSORY IMPAIRMENTS
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In the May 2013 Edition of DSM 5th Edition (DSM-5), the realm of restricted, repetitive patterns of SENSORY behavior, interests, or activities has been expanded to include abnormalities in ‘sensory processing impairments.’ The objective of adding this to the behavioral domain was to help clinicians perform diagnosis more accurately, thus identifying cases requiring treatment with greater accuracy.

The DSM-5 is a living document which provides a common language for clinicians, patients, and researchers to communicate information about symptoms, as well as to accurately diagnose mental, behavioral, and personality disorders. Retrieved from: https://www.steppingstonesca.com/single-post/2016/09/22/A-Quick-Guide-To-The-DSM-5-Criteria

< My Thoughts >       “perform diagnosis more accurately, thus identifying cases requiring treatment with greater accuracy.”

As a parent and/or teacher, you will become a trained observer, learning to recognize ‘sensory impairments’ in your child or student. This in turn, will help clinicians find just the right diagnosis, treatment, and intervention for that child.

Remember that the DSM-5 is a ‘living document’, that is because the ‘bar’ gauging ‘severity’ is forever changing. Your child, student, or patient is also forever changing. As observers, you are identifying the ‘current’ pattern, behavioral crisis, or behavioral activity. Just saying.

The National Institute of Health (NIH) website tells us that maladaptive behaviors such as ‘stereotyped behaviors’, i.e. sensory impairments, are predictable as a ‘severe sensory feature’ of autism. Retrieved from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3727194/

Banda, et al. (2014) in a review studies of individuals with Autism and Sensory Impairments, having the overlapping condition/characteristics of sensory impairments. These impairments varied in the levels of severity, as well as the number of impairments; to include – vision, hearing, and/or communication. In addition, four of the studies targeted problem co-existing behaviors such as self-injury, aggression, vocal disruption, and self-stimulatory activity.

Fuentes, et al. (2010) talk about studies using questionnaires which revealed general differences in sensory experience of auditory, visual, tactile, and movement processing in those children with and without Autism. This study noted that there was no significant difference in IQ between the groups.

They found that the sense of position and movement of parts of the body, proprioception, played a crucial role in successfully interacting with the environment. The general tone of responses from study participants was conveyed in these two statements –

“I could not point at objects for many reasons. The most important reason is that I had very little sensation of my body.” (Tito Mukhopadhyay), And, “ In childhood I had real problems in knowing exactly where my connectional limbs and trunk were… where they would move to next, and even more frighteningly, where they had last been positioned.” (Lucy Blackman).

Sensory impairments in the ASD group were significantly worse than those in the group without an autism diagnosis. Researchers said that successful ‘skill’ performance on the PANESS assessment involved good sensory processing and rapid execution of finely controlled movements; such as tool use and skill imitation.

< My Thoughts >       “the PANESS assessment…”

​The official title of the PANESS assessment is Positive And Negative Syndrome Scale; Positive meaning ‘productive’ symptoms, and Negative to mean showing ‘deficit’ features. According to an online interview with Lewis Alan Opler, Long Island University, one of the co-authors of PANESS, said that their PANESS assessment is still valid, reliable, and user friendly instrument. An accompanying comment by Bajouco, Hospitais da Universidade de Coimbra, stated that for another assessment of negative symptoms of diminished emotional expression, and motivation/pleasure one could use is the Brief Negative Symptoms Scale (BNSS). Retrieved from: https://www.researchgate.net/post/What_is_the_best_alternative_to_PANNS_in_assessing_psychosis
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 BLOG #5J – SENSORY DIET
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Nancy Penske may surprise us by saying that the Sensory Diet is actually NOT about food, but about sensory enriched activities to fulfill a person’s sensory needs. Occupational Therapist, Patricia Wilbarger devised a personalized activity plan which was soon called a Sensory Diet Plan. The purpose of this individualized plan, when followed for 10-20 minutes per day, would help to assist with adaptive, positive responses to environmental stimuli. Retrieved from:https://www.sensorysmartparent.com/sensory-diet

These activities are designed to keep the brain’s neuro-chemicals flowing steadily throughout the day to improve learning. But before you can create a Sensory Diet, it helps to know what sensory issues are at risk. Enter the ‘Sensory Profile’ devised by Winnie Dunn. Gay & Baranek (2008) draw the conclusion that Dr. Dunn believed we are ‘seekers’ of sensations in our environment. Dunn believing that understanding how bodies differ, allows for respect and even embracing of those differences in ourselves and others. (The Sensory Profile was discussed in BLOG #5I.)

Sensory enriched activities, aka Sensory Diets help those with Autism Spectrum Disorder which are somewhat predisposed to anxiety created by their many sensory avoidance and arousal issues, according to Rosen, et al. (2016). They feel that anxiety seems to be mostly associated with higher intellectual function and higher social functioning persons. And, that deficits in these areas can be difficult to detect in those with limited verbal ability, as well.

They found that behavioral intervention targeting anxiety should be evidence-based and provided by well-established treatments. Experienced professionals, they say, will be able to distinguish the individual’s current functioning levels and create an affective Sensory Diet.

< My Thoughts >       “…Experienced professionals…”

Some of us have a high threshold when sensation seeking, while others of us have a low threshold. How can you tell the difference, or how can you tell if your child is having sensory processing problems? Really, it takes a clinician or team of people in the field to make that diagnosis. Parents can look online for examples of Sensory Profile questionnaires to get some idea of how data collection works for developing a Sensory Diet.

In an article on Sensory Defensiveness – Sensory Processing Disorder (Copyright 2004), author Michelle Morris tells us some of the following about the types of

Sensory Defensiveness –

• Oral Defensiveness
• Gravitational Insecurity
• Postural insecurity
• Visual Defensiveness
• Auditory Defensiveness
• Olfactory Defensiveness

Retrieved from: https://www.sensory-processing-disorder.com/sensory-defensiveness.html

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