PDA: 7th Characteristic – What we do…

April 17, 2020 No Comments

In the last post we discussed the 7^th characteristic of the Pathological Demand Avoidance (PDA) profile.

This characteristic involves sensory differences.

Just like all other children on the autism spectrum, children with PDA can have difficulty processing everyday sensory information and can also have balance or body awareness difficulties.

Isla has mixed reactions and responses to a variety of sensory stimuli and this can change from week to week and month to month.

So how do we help her cope?

AT HOME

Let’s have a chat about diet. No, no. I don’t mean cutting out Cheetos. I am talking about a “sensory” diet. It may be a game changer for you and your child.

A sensory diet is a group of activities that are specifically scheduled into a child’s day to help with attention, alertness and adaptive responses.

A formal, official sensory diet should be prescribed by an Occupational Therapist, because the activities chosen for that child’s needs are based on sensory integration theory. A combination of all types of input like proprioceptive, tactile, vestibular, oral motor, etc. are introduced at scheduled times of the day and this combination helps the brain regulate attention and maintain an appropriate level of alertness.

Isla has never been on a FORMAL, OFFICIAL sensory diet. HOWEVER, we absolutely have our own DIY home edition. One reason for this is the fact that Isla has PDA and even sensory activities have to be on her time so scheduling TOO stringently can be problematic for her. The other reason is that Isla is changing. As she grows she enjoys different things at different times and for different amounts of time.

Here are some examples of each type of input that we use that works for Isla, BUT you can find sooo many more examples online. Also, at the end of this series I will do a big “resource” post for more help and info.

Proprioceptive Work… I call this Strong Girl work.

Isla loves to carry weighted objects like a heavy backpack or the large Aquafina case of water. When there is something heavy to carry in or out of the house, Isla is the first to volunteer. Without even knowing it, her body is craving this “strong girl” work.

She loves to push a vacuum or mop, although this 100% does not equate to cleanliness, it does give her something to do and helps her feel as the “perceived” adult when I am cleaning other parts of the house.

Jumping on a trampoline always puts her in a great mood. Always.

Tactile (touch)

There are many choices here like allowing your child to play in tubs of rice, beans, or macaroni, but for Isla, play-dough and clay do the trick.

We have play-dough time at least once per day.

When Isla spends time with her Ama (my mom) she loves to make dough. Guys this is literally flour and water and she LOVES it. She can play with this for an hour just kneading and kneading and kneading away. (With her favorite song in the background of course).

Pottery is a great option too!

Oral (taste or mouth movement)

Think chewy and crunchy. Isla loves to have variety of textures in her snacks and food. She also needs and “craves” intense flavors like extremely salty or sour foods.

Blowing bubbles, sucking on straws and safe chewable items also seem to fulfill this sensory need for Isla.

So when we get her a water bottle or Gatorade, she will automatically go for the one that has a straw or mouth piece that allows you to suck out the liquid.

Again, this girl is so fascinating the way she subconsciously asks for and wants the things her brain NEEDS.

Vestibular (body movement):

For this one, there are so many contraptions that Isla loves in a therapy center but for home… swings and a bike ride are like magic.

**So here is the deal. Can you see how all of these things, with the exception of the vacuum nonsense, can be enjoyable for ALL CHILDREN?**

The difference is that some children can choose to do these things when they please and when they feel like they want a change of pace or change of scenery.

Isla needs guidance here and to be “scheduled” for these activities.

You know how sometimes you DON’T want to exercise because you are tired and in a funk but when you force yourself, you feel so amazing after its over?

**So for Isla, it’s the “forcing” part that we get creative and use the other strategies I mention in this series to help her choose these activities on her own.**

Let’s also quickly talk about replacements. Replacements are important and we will talk about them in the school portion below and in the upcoming posts.

I will just put one example here… chewing. Isla chews everything. Her nails, her jackets, pull strings on hoodies, collar of her shirt, her hair, etc. A replacement would be a straw or chew necklace or a safe chew sensory item so that we keep her clothes intact.

AT SCHOOL

OK. Let’s be real. Most schools do not have specified and particular and organized sensory diets for their students with autism.

Why?

A thousand reasons.

Lack of funding, lack of resources, lack of help, lack of teachers, lack of paraprofessionals, lack of occupational therapists, lack of time, etc. The public school special education system is an overwhelmed system.

BUT…

There is one way that schools can help. A big way that can help big time.

Sensory rooms.

And not just sensory rooms alone… sensory rooms created, maintained, and UTILIZED correctly.

A sensory room is a specially designed room which combines a lot of different stimuli to help students develop and engage their senses. These can include lights, colors, sounds, soft objects, smells all within one safe environment.

There is a lot of research behind sensory rooms. Studies show that SCHEDULED and CORRECTLY used sensory room time can help those with learning difficulties, developmental delays or sensory impairments. It helps them learn to interact with the world around them, but in a safe environment that builds up their confidence and their ability. Sensory rooms are known to help with learning through play, improve balance and spatial orientation, increase focus in the classroom, and help with behavior issues all day long.

Isla’s school district has sensory rooms on EVERY campus. Yes. BUT the most important part of that is that Isla’s school district uses the sensory rooms CORRECTLY.

Isla’s happy place in her school… Sensory Room

Sensory rooms should be scheduled into the day like therapy. Isla goes for 15 min every morning and 15 minutes every afternoon. Her class is split into two groups and she has flexibility of which group to choose each session.

Isla goes to the sensory room twice per day REGARDLESS if she is “behaving” or not. The sensory room is not used for “problem behavior”. Her sensory room came with proper maintenance and predetermined schedules and extensive training for teachers and staff to use them correctly.

Just think, if sensory rooms were used for a student who had “problem behavior”, don’t you think that child would exhibit that same “problem behavior” everyday knowing they would get to go to the room with cool lights and a water bed in return? I would.

Summary:

Schools, please, please give your students with special needs sensory rooms.

Schools, please, please use them correctly. Provide good training for your teachers. Use the sensory rooms on a SCHEDULE only. Maintenance the rooms often.

Schools, please, please view sensory rooms as an investment and tool to create an optimum learning environment for your special needs students, not just as a way to boost your school district reputation on Facebook.

Let’s also quickly talk about replacements in the classroom. Some quick examples, if a student likes to spit, (like not at people, just spitting in general) this is not their attempt to make you mad. They may need sour things to suck on or something safe to chew. If a student shouts mean words for attention, (Isla has done this) have a word of the day that students can shout whenever they want. It can be funny or happy. So anytime they feel stuck and want to shout out loud, they will shout that word instead like, “PARTY TIME!” Whatever it takes. If a student has a hard time sitting still, bounce ball chairs are awesome for many kids that struggle with ADHD.

Get creative.

Let’s start focusing on experimenting with replacements instead of experimenting with ways to discipline in the home and at school.

REMINDER. DISCLAIMER. These examples and scenarios and strategies are what work for ISLA. They work for Pathological Demand Avoidance (PDA). They work for us. I am not a therapist. I am not a teacher. I am just a momma. A momma that has become a great investigator and scientist when it comes to MY daughter so please, take what you find helpful and respect what you don’t find useful.