To recap, we just learned that the 4th characteristic of the Autism/Pathological Demand Avoidance (PDA) profile is that these children are very comfortable with pretend play and role play usually to the EXTREME.
It is reported that one-third of people with PDA confuse reality with pretend and that can cause conflict during play time with other friends or family.
We also have learned that this is one of the characteristics of PDA that DIFFERS from the assumed AUTISM characteristics. Because the majority of children with autism are found to be greatly deficient in imaginative and pretend play, misdiagnosis and delayed diagnosis occurs often particularly in females with PDA.
Soooo what do we do? What strategies do we use?
There is little room for pretend play at school, so besides making sure and double checking and triple checking that Isla didn’t put my iPhone or my wallet or my keys in her backpack for school (because obviously as an adult she needs those things) we don’t have issues at school with this characteristic.
At home we try to embrace this characteristic with three strategies…
Garage Sales and Hand-me-downs
Yup. Oh people, there is no shame in my hand-me-down game.
Isla wants a real iPhone… sure. She has a very old model with no service that works with WiFi in our home only.
Isla wants a wallet… that’s easy.
Isla wants real credit cards… empty gift cards do the trick.
Isla wants to receive mail and keep a mail bin… we have junk mail galore.
She wants keys for her “car”… sure. Look hard enough and you will find old “anonymous” keys in anyone’s home.
High heels, sunglasses, phone chargers, laptops, clipboards, … you name it. If it is for an “adult” and you need the “real deal” for a kiddo like Isla, garage sales and family hand-me-downs will be a game changer.
LET GO of Societal Expectations
About two years ago, around the time Isla was turning nine, I officially threw away all my pride and ego and traditional views of parenting.
Think about that.
Nine years.
For nine years I cared way too much about what people said or thought about the way Isla dressed, behaved and spoke.
Why?
Because… mommy shaming, impossible social media expectations, fear, resentment, etc. etc.
Then one Friday evening in beautiful South Padre Island, as I watched Isla sway and dance to the live music without a care in the world, I had an “aha moment”.
For many years I worried about Isla not being free to live the life I wanted for her. But it became clear to me in that moment that of all of us, Isla was the MOST FREE. She is always herself, take it or leave it. She lives as she pleases, dances as she pleases, loves as she pleases, and is 100 percent free.
We have to do what society calls “give in” a lot but when we view it as compassion for a daughter that experiences the world differently than us, a daughter differently wired… it’s not giving in.
It’s actually the ultimate gift I could give Isla. The gift of freedom to be herself, always, with whatever that includes.
So if Isla wants to wear boots and tights in the dead heat of the summer… be my guest.
If Isla wants to order food by herself at a restaurant even though her words are sometimes indecipherable… go for it.
If she wants to wear flip flops because those are the few shoes she can put on independently but it’s 30 degrees outside… fine. All good.
If she wants to pick out her own outfit that is mismatched and includes articles of clothing from opposing seasons… yup, I like it.
If she wants to leave her hair down all day and not brush it… sure, she has natural curls that many won’t notice are tangled anyway.
This is about choosing your battles wisely as a parent to such a unique child.
Distraction and adult referencing will work every time if there is something she absolutely can not wear outside the home or if there is something she can not do for safety reasons.
If she wants to wear flip flops in the winter, I will casually chat to her sister June about how much I love my boots and EVERYONE is wearing them because they are in season and they keep my legs so warm and… within seconds Isla will quietly go find her boots.
If she wants to take my keys and go for a “drive” alone, I will casually remind her of that “higher authority” we talked about in characteristic 1 and mention that the police give tickets to any child that tries to drive and that would be scary.
Timed. Supervised. Play dates with KIND children.
I have mentioned this before but it is just so important.
Isla has three female cousins that are very close to her age. A couple of them are our neighbors. This is a huge blessing for our family but presents problems when Isla is not supervised.
During these play dates, Isla usually becomes aggressive or agitated when she is not in charge of the activity or she is not being included because her cognitive level is not sufficient for the game rules or play.
So when I am watching, I notice quickly when Isla’s body language tells me she feels out of control or frustrated. Many of the strategies already mentioned work well like distraction or rewording demands or making her the “perceived” leader. But again, this requires supervision. No way around it.
But a big part of this equation is the three cousins. Neither me or their mommas hide anything from them when it comes to Isla. They know all about her. They know she is different. They know when she is around they will need to be more patient. They know when to ask for adult help. They don’t see her as a burden, they see her as family. Family that needs to be protected more than most, not ignored and left out. This requires candid, honest conversations and a lot of trial and error. It also requires everyone involved understanding that they are all kids. Kids mess up. Kids say the wrong things. Kids also are usually highly underestimated in how much they can understand about special needs children.
Kindness for special needs children is learned. It is practiced. As parents, let’s be their best teacher and give them LIVE social stories of kindess every day.
Can you see how all of the strategies will start to overlap?
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.
