Alright, quick review from the last post.
The 5th characteristic of Pathological Demand Avoidance (PDA) is language delay which is usually dependent on intellectual ability but often with good degree of catch-up.
Children with PDA have a more socially acceptable use of eye contact and conversational timing than others on the autism spectrum. Some children even become fluent in using expressive language but can continue to struggle with comprehension.
For us, for Isla, Applied Behavior Analysis (ABA) therapy was the ultimate game-changer in expanding Isla’s vocabulary, but I am going to reserve a whole post later in this series to ABA so I will wait to elaborate then.
Let’s begin with a component devoted to speech therapists.
I know many.
I even love a few because they are or are just like family to me.
For many special needs mommas, me included, way before we got an autism diagnosis for our child we were told to “try speech therapy first”.
Speech therapy is usually the very first “therapy” we go to, and for most of us, the first of many. We started our very first speech therapy session about a month after this picture was taken. Isla had just turned 2.
Traditional speech therapy provided in a clinic setting didn’t work for my Isla.
We tried it for two years.
Isla would go twice per week while little June bug and I played and ate dinner in the waiting room and accompanied Isla to her three to four bathroom visits per hour. She used the bathroom as her escape mechanism CONSTANTLY. Instead of improving, Isla seemed to become increasingly distracted with each session. She simply could not focus, and every little sound or movement would throw the whole session into a mess.
She also started to resist going in for sessions. As soon as they would call us back, she would wrap herself around my leg like she was on a rope swing. She wouldn’t cry or fuss, but she wouldn’t budge, either.
The therapist would be standing at the entrance waiting patiently, and I would become this crazy bag lady with one hand shushing June and the other hand trying to find the last remaining teething cookie for her in my gigantor purse or Isla’s backpack or my enormous disaster of a diaper bag—all while trying to coax and bribe Isla with snacks or ice cream or a brand new car—or anything, really—just to get her to cooperate. It would sometimes take almost half of the hour-long session to convince Isla to go in, and when things got desperate I would have to leave June on the floor crying while I carried Isla in myself, using my weak but improving peripheral vision to make sure June wasn’t choking on whatever questionably edible item I’d found to give her.
It was a struggle every time.
Now I know why.
You see, it wasn’t the therapist really.
It was the demands.
After a full day of demand after demand in a classroom that was not designed for Isla’s brain and tasks that were too hard and after feeling embarrassed hour after hour with all she didn’t know and couldn’t get right… now her mommy looks stressed and rushed as she shoves a McDonald’s Happy Meal in Isla’s lap. Isla inhales her food as she watches mommy sweat and sigh as she tries to breastfeed little June in the parking lot and then before she can even finish her last chicken nugget, Isla is forced in a room one on one with a stranger to place more demands on her and in that space she doesn’t have other classmates to blend in with.
All eyes on Isla.
All demands on Isla.
It was too much for her, for two years.
So is speech therapy even worth it? Oh my God YES. In fact… without communication Isla would be lost. Lost.
Is speech therapy correctly adapted to each person and diagnosis? Not always.
Does the personality and relationship dynamics of the speech therapist and the patient matter? HELL to the YES.
This means… oh this is sensitive but know this comment is out of love… pure love.
There are so, so many incredible human beings that are speech and occupational and physical therapists that want the BEST for EVERY CHILD EVEN IF THAT MEANS THEY THEMSELVES ARE NOT THE BEST FOR THAT CHILD.
Find these people.
To all of my big hearted speech therapists…
PDA may not pass you by in your career but if it does refer back to the 1st characteristic post and the “what we do” post for that characteristic.
Reword everything. Try to make the patient feel in control of the session. Instead of asking them to do things, identify things, say things, build rapport first. Relationship and trust is everything to these kiddos. Ask them for “help” to do and identify things.
Give choices for everything. Which task comes first, what chair they want to sit in, what room to complete the task, what kind of lighting, where they want you to sit… choices, choices, choices.
Children like Isla need to feel in control at all times. This is not being spoiled. This is not being bad. This is the way their brain works. Period.
You will have to do what society calls “give in” a lot but when you view it as compassion for a person that learns different than you, a person differently wired… it’s not giving in.
It’s actually the ultimate gift to create an environment where someone is allowed to be themselves and learn how to communicate with the world in a way their brain prefers to learn.
OK now let’s talk about time. This part is for everyone.
Literally EVERYONE.
When our family dog died a few months ago, I gathered the girls and said, “Last night Champ was hit by a car and he died.” June exploded. Immediately her eyes were huge with dread and fear and sadness and her whole face became red and splotchy and the tears flowed. She cried loudly. She was literally shaking and so I held her and let her cry it out.
Isla was quiet.
I could see her eyes staring at me but not looking at me. She had no facial expression at all. I repeated myself looking right at her, “Last night Champ was hit by a car and he died.” I didn’t change my words. I didn’t paraphrase a different way. I knew her brain was working hard to understand. I could see the metaphoric wheels turning as she tried to picture “night” a “car” getting “hit” and “died”. I don’t know what images or pictures were flashing through her brain but I knew the slide show was LIVE and on repeat.
She stared at June as she sobbed, now hunched over in my lap. “This happens to a lot of family’s pets,” I said, “I know you are sad and that is OK. It is OK to be sad, but we have our whole family here, and we have each other and Champ is now in doggie heaven.”
Isla finally spoke after what seemed like forever but was probably a good 3 to 4 minutes, “Mom, where?” She still hadn’t put all the pictures together in her head.
I said, “In front of Uncle Eric’s house.”
“Eric find him?” she asked.
“Yes Isla, Eric found him and called daddy last night.”
“Where he is? Where Champ?” she asked. “Isla he is gone. He is in doggie heaven now because all dogs go to heaven.”
Finally, all the pieces fit. So about 5 whole minutes after June, Isla’s face and mouth began to contort and twist up. Her cheeks started to shake and she let out a loud groan that seemed to rise from her belly. Tears where falling fast on her lap and all she could muster was, “I WANT HIM COME BACK! I WANT SEE HIM!”
This story is such a powerful reminder of something you must know about children or adults with autism, at least from my personal experience. They feel. They love. They hurt. They have common sense. They understand. They feel pain.
But… THEY NEED MORE TIME.
They need extra time to process language. They need extra time to process instructions. This means waiting 3-5 full seconds after you tell Isla something. After you ask her something, for 3-5 full seconds you shouldn’t say anything else. Repetition is key but only exact repetition. In this story I repeated myself to Isla with the exact same words so she could continue forming the visual story in her head. If I had rephrased to, “Yesterday Champ got run over and now he is in doggie heaven”, then her visual story would be skewed. She would have to start all over. She would have to find a mental image of “yesterday” like morning? Night? Was it dark? Sunny? She would have to scour her brain for what it looks like to be “run over” like running? My tennis shoes? Like the way I run? She would have to find a mind’s picture to show doggie heaven like the sky? The clouds? Jesus? This would likely cause her to be more confused, frustrated and instead of allowing her to process sadness, the normal response, she would also have to process frustration and impatience with the conflicting information and the opposing mental images.
Just do me a favor and give her time.
Your student with autism, just give him more time.
Your family member with autism, just give her more time.
Your patient with autism, just give him more time.
Your employee with autism, just give her more time.
I wasn’t sure if Isla would ever be able to hold a conversation. Ever. For years she would say “Hi” on repeat, over and over, even in response to questions.
But recently, this happened:
Isla to her Abuelo: “Welo, my dad get new truck.”
Abuelo to Isla: “What? A new truck? But he has a truck already.”
Isla to her Abuelo: “No, no. No. No. Truck for me.”
Abuelo to Isla: “What?!”
Isla laughing: “Yes! Welo I almost teenager! Yes!”
One evening while I tucked Isla and June into bed June asked me how “big” you have to be to drive by yourself. Isla was curled up under blankets half-asleep. So I told June that teenagers start to learn to drive when they are fifteen.
My point…
They are listening. All of them. All of the children that may not look you in the eye when you speak or the children that seem to not understand or the children you think will never speak because like Isla, they only said one word for years.
They are listening.
Keep talking.
Keep explaining things that are ordinary and common. Keep describing the way things work or look.
Keep talking.
Keep interacting.
There is hope.
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.
