​#3 "What to do While You Wait, Investigate!" ~ Prioritize Concerns, 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... Diagnosis &
                         Denial & Doctors 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.

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.

NOTE about:      “Programs, Therapies, & Interventions” 

Information about INTERVENTIONS, THERAPIES, PROGRAMS, and/or TREATMENTS is presented without intent or suggestion of status or effectiveness; or even with the title of an autism ‘intervention’. Most places in the literature and even in some laws, the word ‘intervention’ is used interchangeably with ‘instructional/educational program’, ‘therapy’, and ‘treatment’. The very word ‘INTERVENTION’ when used in the same sentence with ‘autism’ may imply ‘cure’ or ‘long-term’ effect. That is NOT the intention here.

Autism ‘intervention’ as with the phrase, “Early Detection / Early Intervention” may simply mean an ‘action’, or an attempt to ‘change a course’ or trajectory of autism. Also, the expectation for success is that all ‘interventions/therapies/programs will have the cooperation of the participant, the parent, and/or the assigned therapist.

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. To some, AUTISM is a business. So, 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.

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 us. 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; to begin your investigation and search for knowledge. My hope is that you will not feel alone when dealing with the mysteries of Autism Spectrum Disorder. 

Regards,
Sara Luker
​

HOW TO FIND THE INTERVENTION OUTCOME YOU ARE LOOKING FOR…
 
Before looking for a program…  prioritize your child’s
​‘needs’ and  prioritize your ‘wants’.

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

#3 - PRIORITIZE CONCERNS - with < My Thoughts > by Sara Luker
 
What do you worry about the most? What is the most dangerous and/or destructive thing or things your child does? Think about how to keep your child and family 'safe' as the 1st possible priority.
          
Prioritize your child's 'needs' and your 'wants'. Try new things such as 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. 
 
< My Thoughts >       "…works and what doesn't…”
 
Children with autism are individual in their personalities, interests, and learning styles. In the same way ‘autism’ itself presents in an individual way. Getting to know your child and getting to know your child’s autism may be easier to approach as a ‘dual’ understanding.
 
Bowler, et al. (2015) tells us that those with autism have different degrees of difficulties with memory and need to be cued to recall or recognize steps in a task or function. In the ‘discussion’ of the results, it was suggested that future support should be a result of spending time understanding and unpacking the complexity of the task.
 
They went on to say that the difference between ‘supported’ tasks and ‘unsupported’ learning tasks is revealed in this study. Participants found that seeing things in a specific order as with an organizational chart or by being given auditory cues helped them become more effective. Having support improved recognition of the order of events.

Some children with autism have a ‘visual’ learning preference, some have ‘auditory’, ‘kinesthetic’, and ‘verbal’ preferences. Those with visual (see) and kinesthetic (touch) can benefit from a chart similar to the one shown here.

Consider how to prioritize your child’s ‘needs’ and prioritize your ‘wants’ before you make a decision about moving forward with a 'program'. Is it something everyone involved can live with?

#Autism & #COVID19

Autism & COVID-19; www.sarasautismsite.com. Pederson (2020) reports from the Lance Psychiatry Journal that persons on the autism spectrum are at higher risk for COVID-19 complications. The reasons are several, first they tend to have immune disorders and other co morbidities; plus their routines are severely disrupted. Added to that, patients may have communication and expression difficulties which prevent them from comprehending the extremeness of the situation.

If providers are needed, parents and caregivers must keep calm, facilitating communication and managing out-of-the-box thinking, such as using TelaDoc to connect with clinicians. Or, asking to wait in the car and texting you when the doctor is ready to see you; doing any Check-In online. Also, asking to allow the parent and caregiver to accompany the autistic person throughout the visit process.

< My Thoughts >        “,,,allow the parent and caregiver…”

Connecting with new routines, strange environments, persons in masks and gowns, can bring on expected undesirable behavioral responses. Even some behaviors you’ve never seen before. Try to keep a ‘bag of tricks’ handy – communication devices- Apps, iPad, tablets, music with earphones, weighted vest or lap pad, sensory (sight, sound, touch, smell & taste) toys, and/or a favorite cold drink. And of course, any meds needed so as not to miss a dosage if you are detained in the office or in travel. Many times we have scheduled early appointments, only to find ourselves traveling home in heavy 5pm traffic, in spite of our careful planning; due to doctor overbooking, sending us somewhere for tests, or just playing the ‘waiting’ game. When Sonny sees the ‘Toy Story’ lunchbox, this signals several things – we might be going to the park for lunch; we have plenty of goodies to last us; we are out for the long haul. This mindset helps him stay calm until it’s obvious that we are not having fun! More reason to have his favorite Vid, App, or familiar whatever on a never-ending loop.

This is the perfect storm of challenges for parents and caregivers, clinicians, and nearby observers who are convinced they are seeing a ‘very spoiled child’. Maybe it’s time to advertise “Autism Onboard.”

REFERENCE

Pedersen, T. (2020). Meeting the Needs of Autistic Individuals During COVID-19; Retrieved online from – psychcentral.com/