#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 > "What to do 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 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…
- gross motor skills
- speech/language communication
- 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.
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.
Most likely, your child will at some point have a speech therapist to help them with communication. Developing common communication goals is one of the first things to be recommended. 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 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.
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.”
You can find eBooks, YouTube videos and many other sources for teaching ‘baby sign’ language. Give it a try, you may be surprised. Oh, and let me say that first attempts by your child will look like loose gestures, not the real sign. But be patient and pay attention, because they will get upset if you don’t pick up their interpretation of the sign right away. Also, when Sonny can’t remember a sign or I’m ‘not getting it’ he will improvise. So, if he forgets the sign for ‘hurry’ he will frantically give the sign for ‘more’… as in ‘more faster’ I guess. Smiles.
Children make up their own signs and it’s up to you to figure it out before the storm builds and the tantrum comes. Sonny slaps his thighs which can mean something’s funny, or that he’s getting anxious about something. In either case, he wants us to join in and respond to the communication. He may hit his head with and open hand or his knuckles. This can mean that he’s experiencing anxiety, seizure activity or that he just thought of something really funny.
For instance, the sign for ‘more’ is to gesture with both hands, putting fingertips together several times. Sonny’s interpretation at first was to clap his hands together, which he already knew how to do. And eventually when he was able to better approximate the sign for ‘more’, he still clapped his hands first to alert us that he was ‘signing’. He still claps to get our attention that he is signing something.
Sonny has a great sense of humor and I believe that he ‘replays’ videos or certain scenarios in his head, constantly. This is why he may tantrum for no reason. He’s just replayed what he interpreted as a ‘maddening’ event. Maybe earlier in the day his video went off unexpectedly, or his Sippy cup was empty, or someone left a cupboard open. And, on top of all this, it’s up to you to teach all family members and caregivers how to interpret the signing that your child is doing to communicate wants and needs. Sonny’s MA (mental age) is between that of a 2 – 3 year old. So if he can do it… your child should be a whiz at signing!
Then there are the ‘high tech’ approaches to communication. Hill & Flores (2014) tell us that many children with Autism Spectrum Disorder and/or Developmental Delays cannot or do not speak. Some may even lack the gestures such as pointing, waving, flapping, or finding ways to direct persons to what they want or need. Then when the child demonstrates frustration, it is interpreted as noncompliance or defiant behavior. When all they are trying to do is communicate.
These authors suggest Augmentative or Alternative Communication (AAC) devices such as those you can purchase with buttons to push which are programmed with a word or two. Another form of communication they mention is PECS (Picture Exchange Communication System) either in the low tech form of pictures in a notebook, or App in an iPad. Both require a somewhat involved learning process with a partner who is learning it too.
Sonny was taught to use PECS in school. He still has his book and looks at it occasionally for amusement, but the idea of using it to communicate never really ‘took’ for him. We even tried using ‘real’ pictures instead of the graphic ones the program comes with. He does like and has used from the beginning, an AAC device called a ‘Super Talker’ (you can find these online) with recorded messages on four separate picture grids. So he could push a photo of food, drink, toilet, his room.
Of course, the most sophisticated AAC device is the computer. There are endless possibilities there. Get busy, there’s plenty to do to help your child while you wait. Smiles.
References used here are:
Hill, D. & Flores, M. (2014). Comparing the Picture Exchange Communication System and the iPad for Communication of Students with ASD & DD; TechTrends, V58:3, p45-53.
Zhao, M. & Chen, S. (2018). The Effects of Structured Physical Activity Program on Social Iteraction & Communication for Children with Autism; BioMed Research International, V2018, Art.ID 1825046.
Online: (Centers for Disease Control & Prevention )CDC Milestone Tracker Checklist, pdf. on Learn the Signs. Act Early. (cdc.gov/MilestoneTracker)
Note: Next in the What to do While You Wait... Sara's Series of Suggestions is - #3B (in the #3-Series): Social & Daily Living Skills. 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.